# Dealing with Klinefelter's Syndrome / XXY? Come here for friendship and support



## silverbell

I've been meaning to set this up for a while, because as far as I can tell there isn't already a thread where all those dealing with Klinefelter's Syndrome can come to and subscribe to.

We found out my husband had 0 sperm in his ejaculate in June 2011, after having been TTC for almost a year.

2.5 months later we discovered he had Klinefelter's Syndrome following the results of his genetic tests.

In January 2012 he had a microTESE to see if he was making sperm and to extract it if so. Unfortunately he was making absolutely zero sperm.

We are now awaiting our first cycle of donor IUI in mid-March and we are honestly excited for the first time since we first started TTC. For the first time ever there's a chance we can get pregnant and we're so ready to start our family. It won't be in the usual way and given the choice of course we'd prefer things to be different, but we're just grateful we can still get our family.

I thought I'd share a poem I wrote in September last year. I'm sure you can all identify with it.

My Infertility Poem

Almost 4 months have passed
Since that day of pain 
When my dear husband asked
What his tests explained

Those words that were spoken
Were like no other
He said he was broken
&#8220;should find another&#8221;

But he is my husband
I&#8217;ll love him always
So we walk hand in hand
Counting down the days

Impatiently waiting
For each appointment
Hope slowly abating
Such disappointment

Why can&#8217;t it be easy?
None of these issues
All done naturally
No tear-soaked tissues

Through the tears and anger
We keep on hoping
We're both so much stronger
Better at coping

We continue to pray
And hope for the best
Dreaming maybe one day
We both will be blessed

---

Feel free to subscribe, get chatting and share your stories. I hope this will be a place we can all meet up and ask questions and just understand one-another and this very severe male infertility factor. 

There is also an amazing, very active thread for all people dealing with azoospermia (caused by all sorts - not just KS) here:

https://www.babyandbump.com/problems-trying-conceive/376424-dealing-azoospermia.html 

:friends:

Also, for those of you considering using donor sperm there is a great site here: https://www.dcnetwork.org/


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## froliky2011

Beautiful poem. My DH does not have KS but has azoospermia due to Hodgkins Lymphoma when he was 19 and had chemo and radiation. :hugs: What a great way to deal with the pain.....poetry. My DH is the best man ever though and honestly I would not trade him for the world!!!! I believe his cancer has made him more compassionate, empathetic, loving, respectful and open minded than most men out there. :hugs: again!! Hang in there!!


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## theclarks8687

I know this may not be a politically correct statement but I have always felt Klinefelters's was by far worse then azoospermia. Don't get my wrong, I know it hurts that your OH/DH has no sperm but we are also dealing with the medical part of having Klinefelter's. Including my husband feeling like he is part woman. Let me tell you alil more from the beginning.

I met my hubby in later 2006 and by March 2007 we were married. I know I was too young at the time (19) but I was always hoping we would fall pregnant. It wasnt until Dec 2008 that we decided to really start trying. So I requested a visit to see a fertility specialist. I mean almost 2 yrs and there was no sign of a pregnancy I automatically thought it was me. So Feb 2009 we went to the Doctor and what did he tell us? No sperm, notta, as in that lady almost fell out of her chair reading those results. So, he had blood drawn and we went home. He said he would never want children from a donor and we might as well face facts about never being parents. So the doctor called back to set up an appointment from the results and we never went. We instead deployed to Iraq in June 2009.

Now while we were deployed we continued to hope against all hope that he would suddenly start producing sperm. It never happened though. Although, while we were gone he had decided donor sperm would be the answer. So we came home in 2010 and had to let things settle down. In the mean time I found out my SIL was preggo the same month we had decided to try but hubby changed his mind. That hurt. So Hubby became a medical hold over after Iraq and wanted to come off orders before we started pursuing doctors again. But when we found out he would be one for another yr we decided to try starting 2012. 

We called the doctor to find out those results from tests we had taken 3 yrs ago. They told us Klinefelters. Then it clicked when I started reading about it online. Unfortunately a LOT of the medical issues DH was having in 2010 and 2011 were explained by KS. And it hit him hard. He felt like he wasn't a whole man anymore. Started reading the horror stories and he started expecting the worse. It sucks because I have never felt like he was any less or ever had the thought that it meant giving him up to have children. I would spend the rest of my life spoiling nieces and nephews as long as it meant being married to the man I love.

So we are now on our second month of donor sperm and hoping it takes this month and are so excited for the first time in a very long time.


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## Stardust1

Hi there great idea for a thread :flower:
My story goes like this, I have a gorgeous 11 year old son from a previous relationship and my husband and I started trying for a baby in June 2010 a month after our wedding. I've had a prolactinoma (pituitary tumour) since I was a child and have been on dostinex for the elevated prolactin since I was 21, I was infertile before the medication but fell pregnant within a couple of months of starting it (unintentionally I might add). Being as I fell pregnant really easily I figured things would be ok this time, but a year on nothing had happened so we were referred to a fertility specialist and we started with the tests. I was diagnosed with PCOS and was given clomid which at 100mg worked perfectly but still nothing and then in september last year my husband got the first of his sperm analysis results back with the devastating news that there was nothing there. We were told to repeat the test but chances are our only option was TESA or MESA along with icsi and ivf and that there was a good chance they'd find sperm, my husband was given a chromosome and a genetic blood tests along with a second sperm analysis and we were hopeful that we'd still have children of our own. Fast forward to jan 2012 and we were oven the results of the chromosome tests and that my husband had xxy klinefelters syndrome. Our specialist told us that we had one of three options, sperm donor, adoption or forget about having kids, he said that there was no chance of me having my husbands baby and there was nothing more he could do but he gave us the names of some ivf clinics that used donor sperm. There was absolutely no mention that tesa could still work for us so I'm now very confused. We have our first appointment at Complete fertility centre in southampton this Thursday and although it's supposed to be an appointment regarding using a sperm donor the dr is a specialist in male infertility so I'm hoping he might be able to give us better advice than my previous fertility specialist. :shrug:


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## theclarks8687

Stardust1 said:


> Hi there great idea for a thread :flower:
> My story goes like this, I have a gorgeous 11 year old son from a previous relationship and my husband and I started trying for a baby in June 2010 a month after our wedding. I've had a prolactinoma (pituitary tumour) since I was a child and have been on dostinex for the elevated prolactin since I was 21, I was infertile before the medication but fell pregnant within a couple of months of starting it (unintentionally I might add). Being as I fell pregnant really easily I figured things would be ok this time, but a year on nothing had happened so we were referred to a fertility specialist and we started with the tests. I was diagnosed with PCOS and was given clomid which at 100mg worked perfectly but still nothing and then in september last year my husband got the first of his sperm analysis results back with the devastating news that there was nothing there. We were told to repeat the test but chances are our only option was TESA or MESA along with icsi and ivf and that there was a good chance they'd find sperm, my husband was given a chromosome and a genetic blood tests along with a second sperm analysis and we were hopeful that we'd still have children of our own. Fast forward to jan 2012 and we were oven the results of the chromosome tests and that my husband had xxy klinefelters syndrome. Our specialist told us that we had one of three options, sperm donor, adoption or forget about having kids, he said that there was no chance of me having my husbands baby and there was nothing more he could do but he gave us the names of some ivf clinics that used donor sperm. There was absolutely no mention that tesa could still work for us so I'm now very confused. We have our first appointment at Complete fertility centre in southampton this Thursday and although it's supposed to be an appointment regarding using a sperm donor the dr is a specialist in male infertility so I'm hoping he might be able to give us better advice than my previous fertility specialist. :shrug:

I think he said that because to find sperm in a KS patient is very hard. There are hardly any KS men with biological children out there. Let us know how your appointment goes though. Hubby is waiting for a referral to an urologist now. With tricare though it is hard to say what we will be able to afford fertility wise.


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## Stardust1

You are probably right, but surely if there is any hope at all we have a right to decide wether we peruse that treatment, I know my husband would try anything at all how ever small the chances because deep down he still dreams of a child of his own. :hug:


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## theclarks8687

Deep down they all do. Even my "tough guy" broke down and cried last month about it.


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## froliky2011

theclarks8687 said:


> I know this may not be a politically correct statement but I have always felt Klinefelters's was by far worse then azoospermia. Don't get my wrong, I know it hurts that your OH/DH has no sperm but we are also dealing with the medical part of having Klinefelter's. Including my husband feeling like he is part woman. Let me tell you alil more from the beginning.
> 
> I met my hubby in later 2006 and by March 2007 we were married. I know I was too young at the time (19) but I was always hoping we would fall pregnant. It wasnt until Dec 2008 that we decided to really start trying. So I requested a visit to see a fertility specialist. I mean almost 2 yrs and there was no sign of a pregnancy I automatically thought it was me. So Feb 2009 we went to the Doctor and what did he tell us? No sperm, notta, as in that lady almost fell out of her chair reading those results. So, he had blood drawn and we went home. He said he would never want children from a donor and we might as well face facts about never being parents. So the doctor called back to set up an appointment from the results and we never went. We instead deployed to Iraq in June 2009.
> 
> Now while we were deployed we continued to hope against all hope that he would suddenly start producing sperm. It never happened though. Although, while we were gone he had decided donor sperm would be the answer. So we came home in 2010 and had to let things settle down. In the mean time I found out my SIL was preggo the same month we had decided to try but hubby changed his mind. That hurt. So Hubby became a medical hold over after Iraq and wanted to come off orders before we started pursuing doctors again. But when we found out he would be one for another yr we decided to try starting 2012.
> 
> We called the doctor to find out those results from tests we had taken 3 yrs ago. They told us Klinefelters. Then it clicked when I started reading about it online. Unfortunately a LOT of the medical issues DH was having in 2010 and 2011 were explained by KS. And it hit him hard. He felt like he wasn't a whole man anymore. Started reading the horror stories and he started expecting the worse. It sucks because I have never felt like he was any less or ever had the thought that it meant giving him up to have children. I would spend the rest of my life spoiling nieces and nephews as long as it meant being married to the man I love.
> 
> So we are now on our second month of donor sperm and hoping it takes this month and are so excited for the first time in a very long time.

So sorry for the challenges. :hugs:


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## Reb S

Frolicky - so sorry for your loss x


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## froliky2011

Reb - Sorry for yours too!!! :hugs:


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## silverbell

theclarks8687 said:


> We called the doctor to find out those results from tests we had taken 3 yrs ago. They told us Klinefelters. Then it clicked when I started reading about it online. Unfortunately a LOT of the medical issues DH was having in 2010 and 2011 were explained by KS. And it hit him hard. He felt like he wasn't a whole man anymore. Started reading the horror stories and he started expecting the worse. It sucks because I have never felt like he was any less or ever had the thought that it meant giving him up to have children. I would spend the rest of my life spoiling nieces and nephews as long as it meant being married to the man I love.
> 
> So we are now on our second month of donor sperm and hoping it takes this month and are so excited for the first time in a very long time.

It's so interesting reading everybody's stories and reactions. clarks, I'm praying this cycle is the lucky one for you! :dust: :dust:



Stardust1 said:


> Fast forward to jan 2012 and we were oven the results of the chromosome tests and that my husband had xxy klinefelters syndrome. Our specialist told us that we had one of three options, sperm donor, adoption or forget about having kids, he said that there was no chance of me having my husbands baby and there was nothing more he could do but he gave us the names of some ivf clinics that used donor sperm. There was absolutely no mention that tesa could still work for us so I'm now very confused. We have our first appointment at Complete fertility centre in southampton this Thursday and although it's supposed to be an appointment regarding using a sperm donor the dr is a specialist in male infertility so I'm hoping he might be able to give us better advice than my previous fertility specialist. :shrug:

I have to say I find it absolutely shocking that medical profession will continue to tell those diagnosed with KS that there is no chance of having a baby. In roughly 5% of men with KS they are actually producing sperm and this can be retrieved by operation. 5% isn't much, but it's still 5%. It really pees me off when various medical people - who clearly know very little about the syndrome - will write off a couple's future biological family without at least doing a bit of research. This happened to us and I ended up having to educate my GP. I know in the end it didn't matter anyway, as DH wasn't in that lucky 5% and so there were no sperm found but at least we KNOW now - we are 1000000% certain that there was never and will never be any chance whatsoever and that he's completely infertile. This has made our choice to use donor sperm much easier to accept and embrace.

I know some couples go straight to donor sperm or adoption without having the op, but there are some (like my DH and I) that simply wanted to exhaust all possibilities of having biological children together first before using other methods to create our family. I don't think there's anything wrong with that at all.

Good luck on Thursday and do come back and let us know how you get on.

---

It's great to see so many ladies posting here already and sharing your journeys. Mine is mostly detailed on the first page of my journal (link in signature).

Oh and there is also an amazing thread for all ladies dealing with azoospermia (caused by all sorts - not just KS) here:

https://www.babyandbump.com/problems-trying-conceive/376424-dealing-azoospermia.html

The lady who started it is Deb (a lovely new friend) whose husband has unexplained azoospermia and coincidentally she just got her first ever :bfp: today after a FET :dance: I'm over the moon for her! 

It's a very active thread, so sign up if you're interested.


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## clarkea

Heres my story so far, if i can remember its been that long!

I have been ttc with my DH for 7 years. I went for test after about 1 year as nothing was happening. My tests came back clear so decided to just carry on trying. My doctor told me we wernt trying hard enough! Can you believe that lol
After 5 years with still no luck (we left it this long as it took my sister so long to concieve i thought it was me!) we went back to the hospital to see what we could do. They advised to get DH tested. Sperm test came back with zero sperm! Doctor asked he the test was done right! how can you possibly do it wrong! 
Did another test. doctor said it was lost in transit! worrying! Did another test was told to again zero sperm. He wasnt very nice about it either!
Referred to St Marys Manchester, did a load of tests! each with months apart. Taking too long!
Looked up last night and was diagnosed in Feb 2011. 
Was told that we need sperm retrieval, PGD and IVF. but that it all needed to be done in London at Thomas and St Guys as they dont do PGD anywhere else. 
Was told to quit smoking and go back in 2 months. so we did and went back, doc said they will put us on the list for sperm retrieval. Once we had this done at Mancehster we would go straight to LOndon for OGD and IVF. They also said that we would never concieve a boy as he would def have xxy. We got told only a girl.

Went to an endocrinology app in Oct 11 who looked at my DH and said are you sure they confirmed xxy as he looks so normal (good muscle build) testorone level normal etc...
They said he might by mosaic (some xxy and some xy), and that even if his tests came back that he was 47 xxy he probably wouldnt be as they only test a certain part of your blood/sperm. There was no way of them checking all parts so that why if they dont see any normal xy in one smple then they just call you 47 xxy. 

Then received a letter to say that he wasnt mosaic on paper but could still possibly be!
How messed up is that (gave us hope though)

Went to a Genetic councelling app in Jan this year who didnt help one tiny bit! He said he hadnt had to deal with this before and wasnt very clued up on xxy.
He did say though that it is possible for us to have a boy if they get sperm. It was 50/50. that was good news for us as the thought of not having a boy was not nice. Although i would be very happy with a girl. :)

He said that the process was taking too long and that he would find out where we were up to and let us know!

Two weeks after app and not hearing anything at all from anyone i phoned up Manchester hospital to see if we were near the top of the list as we were told 1 year waiting list. 
They said we were no 40 and they only do 2 a month as the doctor has other commitments! It would prob be next year now!

This obviously wasnt acceptable as i was ready to become a mum 7 years ago! the thought of waiting another year i couldnt cope with so i phoned Liverpool womens hospital to see how long their waiting list was.
They said no waiting list so i phoned Manchester to see if we could get transferred. 
They said it would take 1 - 2 weeks to do this.
I phoned 1 week later to make sure everything was going smoothly and they said they hadnt done anything as they need to apply to their funding dept! Its not funded by my PCT its funded by theirs.
They said they would do it that day but the big guys only have a meeting once a month so not sure how long it would take.

We are now just waiting to be transferred over so we can start the ball rolling.

Sorry this is quite long, i have a lot to tell lol


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## silverbell

That's disgusting, clarkea - about the huge wait and also about being told you'd only have a girl. How wrong can you get? As far as I understand it, if your DH is producing sperm then he'll be producing some sperm with that extra 'x' chromosome and some that are normal. If a particular sperm with an extra 'x' chromosome happens to be female then it'll create an XXX female (the female equivalent of KS - called Triple X Syndrome). It's not like only sperm with extra 'x' chromosomes will create boys - how daft is that doctor?! 

I'm so glad you're getting things transferred. The funding process takes ages and I'm glad you're on the ball and keeping an eye on things - make sure you keep checking. You'll know by now that the NHS runs at a snail's pace and you need to keep making sure they're doing what they should be!


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## theclarks8687

There is also no proof yet as to if KS is passed on in heredity yet either. In fact the dont know what really causes it to began with. So to shoot down the hopes of a healthy baby boy is downright rude. It sucks we are dealing with something that so few people know about including the "doctors" we are going to for treatment.


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## theclarks8687

Stardust1 said:


> I know some couples go straight to donor sperm or adoption without having the op, but there are some (like my DH and I) that simply wanted to exhaust all possibilities of having biological children together first before using other methods to create our family. I don't think there's anything wrong with that at all.
> 
> .

We decided on donor sperm first because of financial reasons and I am honestly hoping medical advances will come along in a few more yrs. Since the first time we went to the doctor 3 yrs ago things have already made progress. There is a femae doctor who has been able to extract a single sperm and frozen it successfully to carry on and implant it into an egg and resulted into a baby. But as of right now she is the only one who is able to do that.


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## clarkea

silverbell said:


> That's disgusting, clarkea - about the huge wait and also about being told you'd only have a girl. How wrong can you get? As far as I understand it, if your DH is producing sperm then he'll be producing some sperm with that extra 'x' chromosome and some that are normal. If a particular sperm with an extra 'x' chromosome happens to be female then it'll create an XXX female (the female equivalent of KS - called Triple X Syndrome). It's not like only sperm with extra 'x' chromosomes will create boys - how daft is that doctor?!
> 
> I'm so glad you're getting things transferred. The funding process takes ages and I'm glad you're on the ball and keeping an eye on things - make sure you keep checking. You'll know by now that the NHS runs at a snail's pace and you need to keep making sure they're doing what they should be!

Thats what we have now been told! i have now made a formal complaint to the top guy at St Marys Manchester as its all been far too slow.
Im hoping the funding transfer doesnt take too long. They said no more then a month but i have actually stopped believing what Manchester say coz they dont know what they are talking about!
I have said they have to transfer my notes over asap and that they must keep me informed of the progress. Hopefully that will get them to move a bit faster!


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## clarkea

theclarks8687 said:


> There is also no proof yet as to if KS is passed on in heredity yet either. In fact the dont know what really causes it to began with. So to shoot down the hopes of a healthy baby boy is downright rude. It sucks we are dealing with something that so few people know about including the "doctors" we are going to for treatment.

i know we couldnt believe it either. It was so upsetting to hear that and then to be told it was 50/50 made me think there is no-one out there that actually knows about xxy. We keep getting told differernt things! I agree that it sucks! i think they use us as guinea pigs to experiment to try and find out more!


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## clarkea

theclarks8687 said:


> Stardust1 said:
> 
> 
> I know some couples go straight to donor sperm or adoption without having the op, but there are some (like my DH and I) that simply wanted to exhaust all possibilities of having biological children together first before using other methods to create our family. I don't think there's anything wrong with that at all.
> 
> .
> 
> We decided on donor sperm first because of financial reasons and I am honestly hoping medical advances will come along in a few more yrs. Since the first time we went to the doctor 3 yrs ago things have already made progress. *There is a femae doctor who has been able to extract a single sperm and frozen it successfully to carry on and implant it into an egg and resulted into a baby. But as of right now she is the only one who is able to do that*.Click to expand...

Where has that information come from (female doctor only one)?


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## theclarks8687

clarkea said:


> theclarks8687 said:
> 
> 
> 
> 
> 
> Stardust1 said:
> 
> 
> I know some couples go straight to donor sperm or adoption without having the op, but there are some (like my DH and I) that simply wanted to exhaust all possibilities of having biological children together first before using other methods to create our family. I don't think there's anything wrong with that at all.
> 
> .
> 
> We decided on donor sperm first because of financial reasons and I am honestly hoping medical advances will come along in a few more yrs. Since the first time we went to the doctor 3 yrs ago things have already made progress. *There is a femae doctor who has been able to extract a single sperm and frozen it successfully to carry on and implant it into an egg and resulted into a baby. But as of right now she is the only one who is able to do that*.Click to expand...
> 
> Where has that information come from (female doctor only one)?Click to expand...

Hold on and I will try to find that article.


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## theclarks8687

oh sorry quicker then I thought https://todayhealth.today.msnbc.msn...82-miracle-baby-born-from-single-frozen-sperm

**note** I was wrong it was eight frozen and only one viable one after "defrosting" lol still that is crazy good she is able to do that.


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## clarkea

theclarks8687 said:


> oh sorry quicker then I thought https://todayhealth.today.msnbc.msn...82-miracle-baby-born-from-single-frozen-sperm
> 
> **note** I was wrong it was eight frozen and only one viable one after "defrosting" lol still that is crazy good she is able to do that.

thats just with rozen sperm i think isnt it?

i have found this and it looks like 101 babies have been born. 

Sounds promising anyway :thumbup:

https://humrep.oxfordjournals.org/content/25/3/588.long


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## faithbabies

hey ladies, mind if i join? i've been a member to this site for awhile but didnt know about this group. Will keep my story short though it's really a long long one lol 
My hubby and i started trying on our honeymoon lol we couldnt wait! we've been married 7 years next month...after about a year and no bfp my obgyn did some tests on me and everything was normal so he ordered SA on my husband..showed zero sperm..was referred to a urologist who said no blockage i suggest yall adopt...referred to fertility specialist who ordered the chromosome tests that showed Klinefelter's XXY and she referred us to another urologist who did biopsy of both testicles and found no sperm..we decided to move on to donor sperm with IUI while doing foster/adopt training. We got pregnant on 2nd IUI but miscarried and due to finances and our foster babies we decided to do home insemination. we've used three shipping donors and now are using a good friend that lives nearby..he's a huge blessing to us and if/when i get my bfp he will be uncle. We have been blessed to be able to adopt 2 daughters and working on our first son...there were times i hated Klinefelter's but as i look at my babies today i'm thankful my husband has it in some ways...he just started seeing an endocrinologist and was put on Testosterone as we are hoping it will help his moods/etc. His T levels are on low side of normal but reading and researching the topic has helped me realize K guys need more testosterone than the average guy..i research alot as i'm a nurse haha ;)
looking forward to getting to know yall and share in experiencing bfp's too :)


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## Stardust1

faithbabies said:


> hey ladies, mind if i join? i've been a member to this site for awhile but didnt know about this group. Will keep my story short though it's really a long long one lol
> My hubby and i started trying on our honeymoon lol we couldnt wait! we've been married 7 years next month...after about a year and no bfp my obgyn did some tests on me and everything was normal so he ordered SA on my husband..showed zero sperm..was referred to a urologist who said no blockage i suggest yall adopt...referred to fertility specialist who ordered the chromosome tests that showed Klinefelter's XXY and she referred us to another urologist who did biopsy of both testicles and found no sperm..we decided to move on to donor sperm with IUI while doing foster/adopt training. We got pregnant on 2nd IUI but miscarried and due to finances and our foster babies we decided to do home insemination. we've used three shipping donors and now are using a good friend that lives nearby..he's a huge blessing to us and if/when i get my bfp he will be uncle. We have been blessed to be able to adopt 2 daughters and working on our first son...there were times i hated Klinefelter's but as i look at my babies today i'm thankful my husband has it in some ways...he just started seeing an endocrinologist and was put on Testosterone as we are hoping it will help his moods/etc. His T levels are on low side of normal but reading and researching the topic has helped me realize K guys need more testosterone than the average guy..i research alot as i'm a nurse haha ;)
> looking forward to getting to know yall and share in experiencing bfp's too :)

Hi there :flower: your little girls look very precious. Can I be cheeky and ask about your husbands moods, does he have mood swings? my husband is producing testosterone but we haven't gone as far as finding out about hormone treatment for him as our GP wanted our referral to the ivf clinic to be sorted first.


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## faithbabies

stardust~~ hi! and thank you so much! :) YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better ;) good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway ;)


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## theclarks8687

clarkea said:


> theclarks8687 said:
> 
> 
> oh sorry quicker then I thought https://todayhealth.today.msnbc.msn...82-miracle-baby-born-from-single-frozen-sperm
> 
> **note** I was wrong it was eight frozen and only one viable one after "defrosting" lol still that is crazy good she is able to do that.
> 
> thats just with rozen sperm i think isnt it?
> 
> i have found this and it looks like 101 babies have been born.
> 
> Sounds promising anyway :thumbup:
> 
> https://humrep.oxfordjournals.org/content/25/3/588.longClick to expand...

It was frozen sperm the retrieved from a guy who only had 8 they could find. It sucks that again there isnt enough information out there for us know more about KS and especially KS involving fertility.


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## theclarks8687

faithbabies said:


> stardust~~ hi! and thank you so much! :) YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better ;) good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway ;)

Welcome! your daughters are gorgeous. DH and I are looking into fostering in the next yr. In fact we are supposed to go to a seminar on the 25th to learn more about it if everything goes right.


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## theclarks8687

faithbabies said:


> stardust~~ hi! and thank you so much! :) YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better ;) good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway ;)

My hubby has all those moods. In fact he is looking into the possibilities of being bipolar but I am wondering if it stems from the KS. Unfortunately it is hard to tell with him because a LOT of his family is bipolar.


----------



## faithbabies

theclarks~~ thank you so much! i updated the pic, the first pic was about a year old and now we are in adoption process with ethan so i wanted to include him :) i am so glad yall are looking into fostering..it's challenging but def worth it! i wish u lots of success in that journey! :thumbup: I thought my hubs was bipolar too for awhile..but some days i think i am...seriously tho it wasnt until i researched KS more that i realized how similar the symptoms can be as related to bipolar...the men i spoke with says without their T therapy they are monsters. I do think my hubs can control more of his moods to tell u the truth i think he was just allowed to get away with it so long it's harder for him to calm himself down now. But when he's good he's really good so i love him even in the fits lol ;)


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## silverbell

Welcome, faithbabies. This thread has only been running a few days so you've come in at the right time.

What lovely children you have :cloud9:

Good luck with the donor inseminations. I really wish it wasn't so expensive for infertile couples to just try to create a family.


----------



## theclarks8687

faithbabies said:


> theclarks~~ thank you so much! i updated the pic, the first pic was about a year old and now we are in adoption process with ethan so i wanted to include him :) i am so glad yall are looking into fostering..it's challenging but def worth it! i wish u lots of success in that journey! :thumbup: I thought my hubs was bipolar too for awhile..but some days i think i am...seriously tho it wasnt until i researched KS more that i realized how similar the symptoms can be as related to bipolar...the men i spoke with says without their T therapy they are monsters. I do think my hubs can control more of his moods to tell u the truth i think he was just allowed to get away with it so long it's harder for him to calm himself down now. But when he's good he's really good so i love him even in the fits lol ;)


When I first going off the lists of sign of KS I was like yup yup yup oohhhh thats what is causing that My husband is determined to have atleast one adopted child on top of anything else we may do. And that is so funny about the letting them get away with it. My hubby would be a bit of a monster if I wasnt as stubborn as I am and let him walk all over me. lol


----------



## theclarks8687

silverbell said:


> Good luck with the donor inseminations. I really wish it wasn't so expensive for infertile couples to just try to create a family.

Amen


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## Stardust1

faithbabies said:


> stardust~~ hi! and thank you so much! :) YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better ;) good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway ;)

Oh you could totally be describing my husband there apart from the low self esteem, he is also unbelievably impatient and very very intolerant haha but lovely with it :haha:


----------



## faithbabies

silverbell~ thank you for the warm welcome too and the compliment! :hugs: I also wish it wasnt so expensive to do fertility treatments..but it's not just the money though that's a big part..if we do another IUI we have to pay $350 just for the lab because it's been over a year since i've been and then the iui with everything is like :hugs:$2500 plus sperm from a sperm bank around $1000...it's alot of mulah for one try. Besides that we live an hour away from our RE and you cant bring your kids (duh) and we dont live around family that could keep them for every appt. so it sucks...also the main clinic where we would do the iui is about three hours away :( i do think about going back sometimes though. :shrug:

well ladies i'll be back probably tomorrow...have some sick kiddos over here :wacko: nite!


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## clarkea

Faithbabies your children look adorable.

Where is everyone from anyways?
Im from Preston, Lancashire, England.

My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
We was wondering why after IVF why he'd need the injections as he has managed without them so far! 
Really he just never stresses out. I must admit though when we found out about the KS and the infertility he lost it for a couple of weeks. He just blamed himself so much. But he soon came round and is now back to his normal self.


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## silverbell

clarkea said:


> My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
> He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
> We was wondering why after IVF why he'd need the injections as he has managed without them so far!

Same here :thumbup: My DH doesn't have mood swings at all. He's very laid-back and calm. The only symptom of KS my DH has is the body shape. He's gotten away very lightly from what I've read.

The Testosterone replacement after IVF/biopsy etc is because he has a very increased risk of getting brittle bones - osteoporosis in the future. As well as premature ageing, increased risk of breast cancer etc. The Testosterone is required to help to try to combat the chances of these things happening. Just like when women need HRT when their oestrogen drops after the menopause, so our KS partners need replacement because their testosterone is low. For their future health. Any improved energy or moods is just a bonus.


----------



## clarkea

silverbell said:


> clarkea said:
> 
> 
> My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
> He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
> We was wondering why after IVF why he'd need the injections as he has managed without them so far!
> 
> Same here :thumbup: My DH doesn't have mood swings at all. He's very laid-back and calm. The only symptom of KS my DH has is the body shape. He's gotten away very lightly from what I've read.
> 
> The Testosterone replacement after IVF/biopsy etc is because he has a very increased risk of getting brittle bones - osteoporosis in the future. As well as premature ageing, increased risk of breast cancer etc. The Testosterone is required to help to try to combat the chances of these things happening. Just like when women need HRT when their oestrogen drops after the menopause, so our KS partners need replacement because their testosterone is low. For their future health. Any improved energy or moods is just a bonus.Click to expand...

Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS. 
Its meant to be hard to gain muscle isnt it? 
i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they! 

ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...


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## silverbell

clarkea said:


> Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS.
> Its meant to be hard to gain muscle isnt it?
> i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they!
> 
> ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...

Oh, sorry, yes, obviously infertility for my DH too.

Yes it is meant to be very hard to gain muscle. You're right - 6 sperm tests can't be wrong but that will just prove azoospermia. I guess the genetics test for KS (karyotype) could always be wrong, but it's highly doubtful.

Oh I see. That's unusual about the normal Testosterone. Most things I've read have suggested it's a big side effect of having KS. In that case I don't know whether he'd need it or not - it would be a good idea to get him to see an Endocrinologist to discuss the KS in more detail I would think.


----------



## clarkea

silverbell said:


> clarkea said:
> 
> 
> Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS.
> Its meant to be hard to gain muscle isnt it?
> i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they!
> 
> ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...
> 
> Oh, sorry, yes, obviously infertility for my DH too.
> 
> Yes it is meant to be very hard to gain muscle. You're right - 6 sperm tests can't be wrong but that will just prove azoospermia. I guess the genetics test for KS (karyotype) could always be wrong, but it's highly doubtful.
> 
> Oh I see. That's unusual about the normal Testosterone. Most things I've read have suggested it's a big side effect of having KS. In that case I don't know whether he'd need it or not - it would be a good idea to get him to see an Endocrinologist to discuss the KS in more detail I would think.Click to expand...

its strange then how my DH has plenty of it. :shrug:
yeah i agree its highly doubtful that the karyotype was wrong. 

We went to see an endocrinologist in Jan this year, it was them who looked at my DH and said are yuo sure its been confirmed xxy. They had to have a feel of his chest and agreed that there was absolutely no man boob there and was all muscle. 
She had to call another guy in to have a look as well. 
They said that he is probably mosaic but confimed it in a letter that he was all 47xxy. They did however say that even if the karotype came back as 47xxy he is probably mosaic as they cant test the whole sample?

i wish they would make there minds up lol.


----------



## faithbabies

clarkea~~ thank you for the compliment :) i am from Texas ....
you are lucky your DH doesnt have as many KS symptoms..i am more laid back so we even each other that but sometimes i want him to calm me down and it's hard lol also, my DH has always had normal testosterone but for KS hormones work differently and many KS patients have told me that the normal level for them is lower than just your average joe's testosterone levels. Most KS patients start taking T therapy as pre teens. Also if your DH has any of the symptoms..there are so many, even in the sexual area, T therapy will help. Our endocrinologist said T therapy will help impove his libido and i was like "oh no can't u give him something to slow him down? lol i'm just not one to want it every day lol " luckily he's not had any issues there, it's more due to his moods and energy level. I've already seen a difference in just a month of shots. 
speaking of mosaic Klinefelter's...they usually are not infertile. (according to research)


----------



## silverbell

Yeah, my DH has had absolutely ZERO problems in the bedroom department, despite having a low Testosterone (8). His Endocrinologist thought there might have been past problems because of it, but he's never, ever had any issues or libido problems. In a way it's a shame he didn't, as it may have prompted us to go to the docs sooner and find out what was going on and we'd have known sooner etc. But c'est la vie!


----------



## clarkea

faithbabies said:


> clarkea~~ thank you for the compliment :) i am from Texas ....
> you are lucky your DH doesnt have as many KS symptoms..i am more laid back so we even each other that but sometimes i want him to calm me down and it's hard lol also, my DH has always had normal testosterone but for KS hormones work differently and many KS patients have told me that the normal level for them is lower than just your average joe's testosterone levels. Most KS patients start taking T therapy as pre teens. Also if your DH has any of the symptoms..there are so many, even in the sexual area, T therapy will help. Our endocrinologist said T therapy will help impove his libido and i was like "oh no can't u give him something to slow him down? lol i'm just not one to want it every day lol " luckily he's not had any issues there, it's more due to his moods and energy level. I've already seen a difference in just a month of shots.
> speaking of mosaic Klinefelter's...they usually are not infertile. (according to research)

yeah we are lucky he doesnt have many symptoms :). like i said just the infertility, 
ha ha my DH doesnt need increased libido either. i like what you said ha ha 
regarding mosaic, ive read that too but i think the fact that we have been ttc for 7 years proves that he isnt. You never know though, it only takes 1! 
they said usually if your mosaic when you have the kyrotype test it would normally show up that there is some normal xy in there but then again they said they couldnt test all of it. 
We have got our heads around that he isnt but i still feel devastated every month when the girlies come!


----------



## clarkea

silverbell said:


> Yeah, my DH has had absolutely ZERO problems in the bedroom department, despite having a low Testosterone (8). His Endocrinologist thought there might have been past problems because of it, but he's never, ever had any issues or libido problems. In a way it's a shame he didn't, as it may have prompted us to go to the docs sooner and find out what was going on and we'd have known sooner etc. But c'est la vie!

i agree same here, if there were symptoms before we would have found out earlier!
My DH testosterone level is normal 9.8
FSH value of 8 which they say is in the upper range of normal 
LH is 8.7

not sure what the normal level should be for LH but the FSH and Testosterone levels are good.


----------



## Stardust1

We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.


----------



## clarkea

Stardust1 said:


> We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.

1 step closer! ahh well im glad they have finally given you the options they should have given you in the first place!
what would testicular failure involve?
when you say testicular volume is low do you mean small testies??


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## Stardust1

I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.


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## Stardust1

Oh and I asked him if my husband should be on any treatment and and he told me no because he was a fit and healthy man with no obvious symptoms (apart from the obvious lack of spermies!)


----------



## theclarks8687

Stardust1 said:


> I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

Lol I'm sorry bit that made me giggle. I told my hubby (who has the smaller ones too) that they are just cuter cause they aren't all droopy and hairy and icky lol


----------



## silverbell

Stardust1 said:


> We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.

I'm so glad you have seen an expert and he's dealing with your situation appropriately. Unfortunately there are a lot of medical professionals out there who don't know enough about KS or even azoospermia and who consequently don't give out the correct and full information and certainly lack a fair bit of compassion.

I hope you guys can come to a mutual decision soon.

I don't know if you're interested, but Mr Ramsay in London is the only person in the UK who will do a microTESE, which involves taking less tissue and gives better results than the standard biopsies offered. We saw him privately for the initial consultation to get the ball rolling and then managed to persuade our GP to do an NHS referral to him. After the referral was received we had to go and see Mr R again on the NHS unfortunately (just one of those things - waited a couple of months I think) and then from then it was around 2.5 months until the NHS operation came up.

Don't want to complicate what's already a difficult decision for you guys, but didn't know if this option would help either of you.


----------



## clarkea

Stardust1 said:


> I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

ahh right but wouldnt the testostorone help with that? I know they have said to us that there is a very big chance when they do it they will hit something which will mean he will need to be on injections for the rest of his life. I think that is the same as what you have been told.
Anyway we are going ahead with this. We have discussed it in detail and have decided that if there is any possibilty of having a child fathered by my DH then its a chance we are willing to take.
It does scare us but for us the chance is worth it.
I dont know if this helps you in any way but just to let you know we are chancing it.

ha ha my DH are slightly smaller then average too, keeps it looking tidy though hey lol


----------



## clarkea

theclarks8687 said:


> Stardust1 said:
> 
> 
> I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.
> 
> Lol I'm sorry bit that made me giggle. I told my hubby (who has the smaller ones too) that they are just cuter cause they aren't all droopy and hairy and icky lolClick to expand...

ha ha ha ha ha im sat here lol


----------



## theclarks8687

So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.


----------



## clarkea

theclarks8687 said:


> So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

ha ha funny, same here my DH sex drive is very high! He's randy all the time lol. Id say average we are about twice a week too. 
The first time i'd heard that it should be low is on here. No docs have mentioned this to us so i was quite shocked when it was mentioned on here.


----------



## theclarks8687

clarkea said:


> theclarks8687 said:
> 
> 
> So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.
> 
> ha ha funny, same here my DH sex drive is very high! He's randy all the time lol. Id say average we are about twice a week too.
> The first time i'd heard that it should be low is on here. No docs have mentioned this to us so i was quite shocked when it was mentioned on here.Click to expand...

I had originally found out about it on the information online along with hubby. Of course that made him think his libido was on the low side and now every time he pounces I say "libido my ass" lol to let him no I think that its full of crock he thinks he is lacking.


----------



## silverbell

theclarks8687 said:


> So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

Absolutely no problems here either. Very regular (3 or 4 times a week usually) and never any problems with performance etc. After over 7 years I think that says a lot too lol.

Low libido is apparently linked to low Tesosterone and those guys with KS usually have a low Testosterone due to the usual testicular failure that comes with the syndrome.

But just like those men with KS don't all have the same features of the syndrome, it appears libido isn't affected for all of them either. I wonder if perhaps some of these guys have just gotten used to not having as much Testosterone because they were born with it? No ideas. I'm just very glad my DH's libido isn't affected because this diagnosis and the azoospermia is hard enough to deal with as it is, isn't it?


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## Stardust1

Definately no low libido here either at least every other day everyday sometimes, I was concerned though that if his testosterone were to drop it might affect it, that would finish him off I think lol!


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## theclarks8687

Wow 7 yrs and u get laid that much? Lucky lady lol I am thankful for one thing about the ne sperm part. I see so many lttc couples that make doing the deed a chore and with my DH and I, I know everytime we do it, is simply because we love each other and finds me doable lol sex will never become a chore for us.


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## silverbell

theclarks8687 said:


> Wow 7 yrs and u get laid that much? Lucky lady lol I am thankful for one thing about the ne sperm part. I see so many lttc couples that make doing the deed a chore and with my DH and I, I know everytime we do it, is simply because we love each other and finds me doable lol sex will never become a chore for us.

:rofl: Yes, I really get laid that much. After 5 years of marriage I'd been warned things would get stale ... if anything they're better than ever.

To be honest even though we'd been TTC for nearly a year when we found out about DH, sex still wasn't a chore because we just enjoy it too much. Any excuse and all that! We both have high sex drives.

I do think what your last sentence says is sweet and very true though. Sex for us couples now is purely for the pleasure and intimacy and will never, ever be for anything else, which is kinda cool. Well, we've got to look at the positives right!


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## theclarks8687

Hey I believe you have to look at the positives and crack jokes along the way. Otherwise the whole situation is just too dang depressing


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## theclarks8687

How is everyone doing this week?


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## Stardust1

Woah huge congratulations on you bfp! You must be thrilled x x


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## theclarks8687

Stardust1 said:


> Woah huge congratulations on you bfp! You must be thrilled x x

Yes I am bit it is very nerve wracking too after 5 yrs. now its a matter of if it sticks, if it does are we gonna tell anyone who knows us it a donor or convince them otherwise, are we gonna tell the baby. Eck:.....so how r u?


----------



## silverbell

theclarks8687 said:


> Stardust1 said:
> 
> 
> Woah huge congratulations on you bfp! You must be thrilled x x
> 
> Yes I am bit it is very nerve wracking too after 5 yrs. now its a matter of if it sticks, if it does are we gonna tell anyone who knows us it a donor or convince them otherwise, are we gonna tell the baby. Eck:.....so how r u?Click to expand...

clarks! Awesome, awesome news! Congratulations! :dance: :happydance:

I'm so pleased for you!

You've got a lot of time yet to think about what you're going to do. There's loads of things out there on the world wide web about telling or not telling and I'm sure you'll find it useful (if you haven't already checked it all out).

https://www.dcnetwork.org/

Is a particularly helpful and informative site.

CONGRATS! Over the moon for you :hugs:


----------



## clarkea

theclarks8687 said:


> How is everyone doing this week?

ahh so happy for you! Bet you are so chuffed! fingers crossed for you. 

i have been thinking that same question if we need to go through Doner sperm 'would you tell'
i think we would tell immidiate family maybe? but noone else. To anyone else - freinds etc.. I think we would say they found some sperm and that its DH bio child.

Alot to think about though but i agree i think you have plenty of time to think about whether to tell your baby or not.

i wouldnt want anyone knowing that the baby isnt bio DH child but thats just me. 

sooooo happy for you x


----------



## theclarks8687

Thank you everyone for he well wishes. I literally cried after seeing a bfp for the first time in 5 yrs.

We haven't had anyone ask but DH's BIL and I'm kinda suspicious as to why he even brought it up. He is the one who had the first grandchild and plans on taking over tje family business after my FIL kicks the bucket I guess. I just feel trouble coming from him but I pray I'm wrong.


----------



## faithbabies

the clarks~~ congrats on your BFP!! so happy for ya! :thumbup::happydance:


afm...about 8dpo..we only managed to get in one donation this month as my donor had some medical issues he had to take care of and i think our donation was a little early..and to add to it i got pos LH surge on First Response opk and negatives on Equate brand (walmart) tests..ugh SMH
so i havent been on here in over a week, i just feel this cycle is out and with my close friend having her baby shower on sunday (i was a hostess) i just didnt need the added stress of symptom spotting and obsessing on here lol
have alot of stuff coming up so i'll be busy but will keep checking in off and on :) baby dust to aLL.


----------



## silverbell

faithbabies said:


> afm...about 8dpo..we only managed to get in one donation this month as my donor had some medical issues he had to take care of and i think our donation was a little early..and to add to it i got pos LH surge on First Response opk and negatives on Equate brand (walmart) tests..ugh SMH
> so i havent been on here in over a week, i just feel this cycle is out and with my close friend having her baby shower on sunday (i was a hostess) i just didnt need the added stress of symptom spotting and obsessing on here lol
> have alot of stuff coming up so i'll be busy but will keep checking in off and on :) baby dust to aLL.

I'm sorry, but I really hope you're wrong and it turns out to be a beautiful surprise :dust:


----------



## faithbabies

silverbell~~ thank you! that was so sweet and just what i needed. :hugs:


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## theclarks8687

faithbabies said:


> the clarks~~ congrats on your BFP!! so happy for ya! :thumbup::happydance:
> 
> 
> afm...about 8dpo..we only managed to get in one donation this month as my donor had some medical issues he had to take care of and i think our donation was a little early..and to add to it i got pos LH surge on First Response opk and negatives on Equate brand (walmart) tests..ugh SMH
> so i havent been on here in over a week, i just feel this cycle is out and with my close friend having her baby shower on sunday (i was a hostess) i just didnt need the added stress of symptom spotting and obsessing on here lol
> have alot of stuff coming up so i'll be busy but will keep checking in off and on :) baby dust to aLL.

I hope you are wrong too. And remember it only takes once. We were only able to get one donation this month. And plz consider investing in the clear blue digi ov tests. I used the walamarts last month and totally missed the timing. Clear blue u have smiley or no smiley. Takes all the guess work out of it!


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## faithbabies

the clarks~~ aw thanks hon!! :hugs: btw i got one box of clear blue and one box of first response opk's yesterday so i'll prob use both haha...i have never had trouble with opk's, usually use dollar general brand but they arent selling them lately...i would get my surge usually 10 days after af ends but last month was a day early according to first response opk...i will def use the smiley faces now :) thank you.


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## theclarks8687

I know they r pricey but if anything shows funny call the number and they send u a new box. Mine acted up one morning but was fine the next but I still got a free box


----------



## faithbabies

:cry: happy birthday to me...AF arrived right on time this morning :cry: onto round 11.... :dust:


----------



## theclarks8687

faithbabies said:


> :cry: happy birthday to me...AF arrived right on time this morning :cry: onto round 11.... :dust:

I'm so sorry hun. I know it can be rough. But do enjoy your bday with your DH and children!


----------



## silverbell

faithbabies said:


> :cry: happy birthday to me...AF arrived right on time this morning :cry: onto round 11.... :dust:

Happy Birthday faith :cake: I hope you have a lovely day despite the evil :witch:

I'm really so sorry about AF, but I hope you're feeling better soon :hugs:

At least you know that this month it really wasn't timed right, whereas this upcoming cycle should hopefully be perfect :thumbup: Keeping everything crossed for success for you this new cycle. :dust:


----------



## faithbabies

thank you theclarks and silverbell yall are so sweet! :hugs:


----------



## silverbell

How's everybody doing? :hugs: Hope you're all OK.

I did my first injection this morning for my first IUI cycle and all went well :thumbup:

Ladies, I'm over the moon because we got funding from the NHS for up to 6 cycles of donor IUI - we found out just a couple of days ago after we'd been told the chances were virtually zero but they'd put in a request for us anyway. Some kindhearted person out there must have taken pity on us. We're absolutely thrilled not to have to worry about the money now just yet. It's such a weight off our minds and it's honestly the first good news we've had since we found out about DH's zero count 10 months ago!

It does bug us though that so many other azoo couples don't get funding :growlmad: :nope: It's just all so unfair and seems to be a bit of pot luck.


----------



## theclarks8687

Congrats on your funding! We are in a horrible limbo at the moment on whether this pregnancy is viable or not because of my hcg levels. They are on the extreme low side.


----------



## silverbell

Oh no, that must be so worrying clarks :hugs:

Keep positive though and I will send lots of positive thoughts your way. I have read about so many ladies who have this and there's nothing wrong and all is fine. Keeping everything crossed it's perfectly fine for you too :hugs:


----------



## theclarks8687

I appreciate that. After 5 yrs of disappointment I just don't know how I'm going to survive loosing the first hope I've had.


----------



## silverbell

I can totally understand that. I'm really hoping it's all fine for you.

[-o&lt;


----------



## clarkea

clarks - my fingers and toes are crossed for you. Keep hope and keep positive.

Silverbell - chuffed you got the NHS funding. Alot of worry to the side! so you had your first injections! what happens next then?

I have finally been referred to Liverpool Womens after waiting over a year on Manchester's waiting list!
I have my first app on April 16th, probably to go through steps. 
:happydance:
fingers crossed this is a speedy journey! we have already waited too long.


----------



## silverbell

clarkea said:


> Silverbell - chuffed you got the NHS funding. Alot of worry to the side! so you had your first injections! what happens next then?
> 
> I have finally been referred to Liverpool Womens after waiting over a year on Manchester's waiting list!
> I have my first app on April 16th, probably to go through steps.
> :happydance:
> fingers crossed this is a speedy journey! we have already waited too long.

Yes, lots and lots of worry to the side. I'm still over the moon about it and feel so grateful :flower:

Yep, had my last stimulating injection today. Have my day 9 scan on Wednesday to see what size my follicles are and make sure there are only 1 or 2. Then they said I'll probably need 1 more scan at the end of the week before they give me a date and time of doing the trigger injection to trigger ovulation and then it's back to the clinic for the DIUI 36 hours later. So excited now. Just praying Wednesday's scan results are as good as they can be.

Great news about being transferred and fingers crossed it's an appointment filled with good news and quick turn-arounds. :happydance:


----------



## theclarks8687

clarkea said:


> clarks - my fingers and toes are crossed for you. Keep hope and keep positive.
> 
> Silverbell - chuffed you got the NHS funding. Alot of worry to the side! so you had your first injections! what happens next then?
> 
> I have finally been referred to Liverpool Womens after waiting over a year on Manchester's waiting list!
> I have my first app on April 16th, probably to go through steps.
> :happydance:
> fingers crossed this is a speedy journey! we have already waited too long.

So glad to hear everything is working out for you. Good luck on you your appt!



silverbell said:


> clarkea said:
> 
> 
> Silverbell - chuffed you got the NHS funding. Alot of worry to the side! so you had your first injections! what happens next then?
> 
> I have finally been referred to Liverpool Womens after waiting over a year on Manchester's waiting list!
> I have my first app on April 16th, probably to go through steps.
> :happydance:
> fingers crossed this is a speedy journey! we have already waited too long.
> 
> Yes, lots and lots of worry to the side. I'm still over the moon about it and feel so grateful :flower:
> 
> Yep, had my last stimulating injection today. Have my day 9 scan on Wednesday to see what size my follicles are and make sure there are only 1 or 2. Then they said I'll probably need 1 more scan at the end of the week before they give me a date and time of doing the trigger injection to trigger ovulation and then it's back to the clinic for the DIUI 36 hours later. So excited now. Just praying Wednesday's scan results are as good as they can be.
> 
> Great news about being transferred and fingers crossed it's an appointment filled with good news and quick turn-arounds. :happydance:Click to expand...

Wish you all the luck that everything works out and those follicles looks perfect!



**update** nope no update, took another blood test today but wont get the results till tomorrow at the earliest if I am lucky.


----------



## silverbell

Thinking of you, clarks, and praying for really reassuring news. Let us know how you get on :hugs:


----------



## theclarks8687

I appreciate that and I promise I will


----------



## theclarks8687

I got my call, hcg is still low but rising still and all my other levels are normal and they are treating this as a normal pregnancy


----------



## silverbell

Only just saw your post, clarks. I'm guessing all is still going well. Great stuff! :thumbup:

How is everybody else?

I have my first DIUI tomorrow. So excited! 

DH and I had a little cry yesterday and a chat about it. I'm so excited at the very real prospect of getting pregnant now, but so sad, sad, sad that it's not my DH's swimmers. :cry: But we know this is the only way we'll experience pregnancy and we know that we'll love a child to bits regardless of whose genes it has.


----------



## Stardust1

That's so exciting Silverbell. Its all so bittersweet though isn't it. My husband and I have decided on the DS route now and we went for our implication councilling a couple of weeks ago, the whole thing made me and my husband feel sadder than before, how does that figure? We have our injection training next Friday and we've chosen our donor, so as soon as this cycle finishes we are all go. 
I hope things went really really well, I'm thinking about you both x x


----------



## silverbell

Stardust1 said:


> That's so exciting Silverbell. Its all so bittersweet though isn't it. My husband and I have decided on the DS route now and we went for our implication councilling a couple of weeks ago, the whole thing made me and my husband feel sadder than before, how does that figure? We have our injection training next Friday and we've chosen our donor, so as soon as this cycle finishes we are all go.
> I hope things went really really well, I'm thinking about you both x x

Yes, stardust, it's very bittersweet indeed. I'm glad you've both decided on the route for you. We actually found the implication counselling made us feel better about things and we found that we were more prepared and happy with our choice than we'd thought we were, which surprised us (and the counsellor!). I guess nothing is the same for any of us at the end of the day - we're all different individuals and couples and we all deal with things differently. Don't get me wrong though - it's a very sad time and bittersweet is exactly the right term to use. We've known about DH's KS since last August though, so we've had longer to come to terms with things and we were warned of a very low success rate for the biopsy he had in January, so we had also been prepared for the zero results for that too. 

Good luck with your injection training next Friday. I hope your cycle is soon here and you can start getting excited about TTC again. :hugs:

Things went very well yesterday and I have 45 million :spermy: inside me! Praying that it brings a lovely BFP in a couple of weeks. It's all down to nature now.


----------



## theclarks8687

Hey girls,

I'm so glad things are going well for yall. I know the bittersweet feeling it never really goes away. But I can also say when you pregnant and you both get wrapped up in the process, things change a bit. I almost forget at times I'm not carrying my hubbys dna because I know I am carrying his child. I think sometimes he even forgets. Although it might be a bit different for us cause we felt so close to loosing this lo. I pray you two get successful bfps soon! Update here is we jumped from 866 to 3644 on my hcg levels in a week. (Please don't judge) now I am truly struggling quitting smoking. I had almost quit in the beginning but when I felt like they were just expecting me to mc I basically relapsed. But I'm almost there. Just have to give up the 4 cigs a day I've been smoking. And we get our first ultrasound Tuesday. I'm so excited and scared at the same time.


----------



## silverbell

Blimey, that's a massive jump in HCG levels. Excellent news!

I don't think you have any fear of being judged here :hugs: 

I'm glad to hear you're almost there with the quitting smoking. It's great you're trying your hardest and of course you'll know the benefits to your little one, which will certainly spur you on I imagine! Good luck for Tuesday and please let us know how you get on :hugs:


----------



## theclarks8687

Thank you and I will. And let us know as soon as u do!


----------



## theclarks8687

I'm pretty sure my baby stopped growing at 6w5d. I went in for my ultrasound and the lady was like well you don't seem to be as far along as you thought. I told her that was impossible. DH has no sperm and I know my exact day of conception. I have to wait till Monday for the official verdict but I know the truth already. Babies aren't supposed to measure 3 weeks behind and there was no mention of a hb. My heart is breaking and DH doesn't wanna talk about it to anyone till we know for sure.


----------



## silverbell

theclarks8687 said:


> I'm pretty sure my baby stopped growing at 6w5d. I went in for my ultrasound and the lady was like well you don't seem to be as far along as you thought. I told her that was impossible. DH has no sperm and I know my exact day of conception. I have to wait till Monday for the official verdict but I know the truth already. Babies aren't supposed to measure 3 weeks behind and there was no mention of a hb. My heart is breaking and DH doesn't wanna talk about it to anyone till we know for sure.

:hugs:

Clarks, I am praying that this lady was wrong. You must feel terrible. It seems shocking that you have to wait until Monday. Why is that? That's just wrong :nope: 

Thinking of you Clarks. :hugs:


----------



## theclarks8687

That is the soonest the doctor will be in. I can't believe I have to wait that long either. You would think they could do something sooner.


----------



## silverbell

theclarks8687 said:


> That is the soonest the doctor will be in. I can't believe I have to wait that long either. You would think they could do something sooner.

Is there nowhere you could get another scan sooner where you live? I know in the UK most hospitals have an EPAU - early pregnancy assessment unit - and although they don't routinely do scans at request I know they will sometimes make an exception for distressed ladies. Is there anything like this where you live? Or is there an option of paying to go elsewhere?

I feel terrible for you. I can't imagine how you're feeling. You've had enough crap to deal with already without this. You've certainly had enough of being in limbo.

I really, really, really hope and wish and pray that they're wrong. Thinking of you so much :hugs:


----------



## theclarks8687

No unfortunately here with my insurance a scan would cost 500 us dollars. Otherwise I would have gotten a scan earlier on when hcg levels were showing so low. Honestly I think my doctor should have had me in a lot sooner for a scan and I think after this pregnancy is either way I will definently be changing doctors. I really do hate the limbo worst then anything. And after 5 yrs it just seems so unfair. I wont lie I am very angry at God right now.


----------



## silverbell

theclarks8687 said:


> No unfortunately here with my insurance a scan would cost 500 us dollars. Otherwise I would have gotten a scan earlier on when hcg levels were showing so low. Honestly I think my doctor should have had me in a lot sooner for a scan and I think after this pregnancy is either way I will definently be changing doctors. I really do hate the limbo worst then anything. And after 5 yrs it just seems so unfair. I wont lie I am very angry at God right now.

I am so sorry, clarks. I agree they should have gotten you in sooner based on that.

Keeping everything crossed for you and thinking of you.


----------



## Stardust1

:hugs:I am so so sorry, this must be so heartbreaking :( I am hoping and praying that the woman doing the scan just got it wrong :hugs:


----------



## silverbell

Thinking of you, clarks. :hugs:



I'm out this cycle girls. AF showed up at an appalling 9dpiui today.


----------



## Stardust1

Oh Silverbell I'm so sorry :( I was so hopeful that it was gonna work first time for you guys :hugs: :cry:

We had the injection training today, poor dh nearly passed out. Then we had the joy of parting with £1135 and another £150-£250 on Monday for our drugs. I'm hoping so much that we get this first time as we are already having to sell stuff to fund this :(


----------



## theclarks8687

silverbell said:


> Thinking of you, clarks. :hugs:
> 
> 
> 
> I'm out this cycle girls. AF showed up at an appalling 9dpiui today.

I'm so sorry silverbell. I know AF sucks. But we all know the odds of the first try. I know it doesn't help much but it was what I had to keep reminding myself after the first try.



Stardust1 said:


> Oh Silverbell I'm so sorry :( I was so hopeful that it was gonna work first time for you guys :hugs: :cry:
> 
> We had the injection training today, poor dh nearly passed out. Then we had the joy of parting with £1135 and another £150-£250 on Monday for our drugs. I'm hoping so much that we get this first time as we are already having to sell stuff to fund this :(

And I completely understand the selling stiff for that extra money. I got rid of most of ky dcs collection the second month. Huge deal for me as I had been collecting them for yrs.


----------



## clarkea

theclarks8687 said:


> silverbell said:
> 
> 
> Thinking of you, clarks. :hugs:
> 
> 
> 
> I'm out this cycle girls. AF showed up at an appalling 9dpiui today.
> 
> I'm so sorry silverbell. I know AF sucks. But we all know the odds of the first try. I know it doesn't help much but it was what I had to keep reminding myself after the first try.
> 
> 
> 
> Stardust1 said:
> 
> 
> Oh Silverbell I'm so sorry :( I was so hopeful that it was gonna work first time for you guys :hugs: :cry:
> 
> We had the injection training today, poor dh nearly passed out. Then we had the joy of parting with £1135 and another £150-£250 on Monday for our drugs. I'm hoping so much that we get this first time as we are already having to sell stuff to fund this :(Click to expand...
> 
> And I completely understand the selling stiff for that extra money. I got rid of most of ky dcs collection the second month. Huge deal for me as I had been collecting them for yrs.Click to expand...

SOunds like your all very busy!!
Silverbell, im soo sorry to hear this. x
Stardust - this must be exciting for you! Where are you up to now then? How are the injections? 

We went for our app yesterday to Liverpool. They took yet again more blood tests and said that i need a DYE test. Not sure why! as we know the reason why i cant get pregnant!
Dh has to do another spermy test, im not sure why, he has already done so many! 
Once thats done doc said he would give us an app within the month and give us a operation date for the sperm retrieval. He said its most likely to be June. He did say if they find any they will freeze it and then it will be IVF a couple of month after that.
i know this is still a little while away but compared to how long we had to wait at Manchester hospital i feel on :cloud9:

i didnt know that if they find some they would freeze it! as couldnt that damage it? 
i did think it would be a bit quicker then this as that the whole reason we went with Liverpool womens. Im just not sure why they have to do more tests!

clarks - how did you get on, praying for you x


----------



## theclarks8687

My levels started going down. So I am now in a waiting room waiting on my D&C. I just don't want any complications. Hopefully that is not too much to ask for after all this.


----------



## theclarks8687

And I meant my dvd collection is what I sold...stupid autotext.


----------



## Stardust1

theclarks8687 said:


> My levels started going down. So I am now in a waiting room waiting on my D&C. I just don't want any complications. Hopefully that is not too much to ask for after all this.

:hugs: I'm so so sorry, I can't begin to imagine how you feel, sometimes this life is unbelievably cruel and unfair.xxxxx


----------



## Stardust1

Hey Clarkea, seems like everything is moving along for you guys too. I've not started my injections gotta wait for stupid AF to turn up, should be here by Friday at the latest though, they give me an internal scan on day 1 or 2 of my cycle then the injections start, so by the weekend I'm gonna have to man up! I'm really excited though, but very inside excited if you know what I mean:happydance:


----------



## silverbell

I am so sorry clarks. Thinking of you at this sad time :hugs:


----------



## theclarks8687

I really appreciate the support l have recieved from this group. I am very thankful to have found ladies who understand the struggles of ks. My surgery went better then I thought it would. And I'm gonna jump right back on the horse as soon as I can. I pray we all end up giving birth in 2013.


----------



## silverbell

theclarks8687 said:


> I really appreciate the support l have recieved from this group. I am very thankful to have found ladies who understand the struggles of ks. My surgery went better then I thought it would. And I'm gonna jump right back on the horse as soon as I can. I pray we all end up giving birth in 2013.

I'm glad all went well.

Glad to hear you'll be jumping right back into it and I am positive we'll all have our little ones very, very soon :hugs:


----------



## Stardust1

Hey guys hope everyone is ok it's been a tough couple of weeks for some of you. 
I've just gotten back from the hospital having had my cd1 scan. I'm now waiting on a call from the nurse to see if we can start injectables tomorrow. I have three large follicles already, the largest being 12mm, they may be left over from last cycle and will shrink back but if not the dr's may say no DIUI this month :cry: the nurse is going to discuss it with the dr at lunch time so I have everything crossed that they will say yes. I came out armed with all my drugs needles and progesterone suppositories so I'm hoping to start it all tomorrow. :shrug:


----------



## silverbell

Stardust1 said:


> Hey guys hope everyone is ok it's been a tough couple of weeks for some of you.
> I've just gotten back from the hospital having had my cd1 scan. I'm now waiting on a call from the nurse to see if we can start injectables tomorrow. I have three large follicles already, the largest being 12mm, they may be left over from last cycle and will shrink back but if not the dr's may say no DIUI this month :cry: the nurse is going to discuss it with the dr at lunch time so I have everything crossed that they will say yes. I came out armed with all my drugs needles and progesterone suppositories so I'm hoping to start it all tomorrow. :shrug:

I really hope it's good news and they'll let you carry on :hugs:


----------



## Stardust1

Thanks Silverbell, I wish they'd hurry up and call now, I'm sooo impatient :(


----------



## Stardust1

:cry: I'm gutted, they have cancelled. The nurse said the dr didn't think it would give me my best chance if we carried on this month, I'm so angry at my body and my stupid polycistic ovaries, my next cycle won't be till the very end of May now :( why can't one thing go right for once grrrr 
Sorry for the rant x


----------



## theclarks8687

I'm so sorry to hear that stardust. I know the wait is hardest part sometimes.


----------



## theclarks8687

Hey checking in all you ladies. Found out I lost a little girl, so yeah that sucks. But we are starting over this month. I was already given the clear to try again. So I am now peeing on a stick everyday looking for that O day. Not on any meds as of yet. Gonna try just the insemination part. What is new with everyone else? I hope you are all doing well.


----------



## silverbell

theclarks8687 said:


> Hey checking in all you ladies. Found out I lost a little girl, so yeah that sucks. But we are starting over this month. I was already given the clear to try again. So I am now peeing on a stick everyday looking for that O day. Not on any meds as of yet. Gonna try just the insemination part. What is new with everyone else? I hope you are all doing well.

Hey clarks

I'm so sorry. I have to ask though - how did they know it was a little girl? I thought it would be too early? Sorry if this is insensitive - I am just intrigued and didn't know they could do this.

I'm glad you've been given the all-clear. Did you get your O day yet?

I had my 3rd IUI cancelled this week due to over-stimulation, so after 2 very early AF bleeds I have yet to actually have a full cycle. :nope:


----------



## Stardust1

Silverbell I'm so sorry they cancelled your cycle, how many follies did you have? it's just such a frustrating process, how many goes do you get on the nhs? My af is due Tuesday or Wednesday so hopefully things will finally start for us this week. I'm so worried that my follicles will be too big again at the beginning of the cycle I think this might be a common thing with pcos. I also read the leaflet inside the meds this week and it said that you shouldn't take gonal f if you have any kind of pituitary tumour or are being treated with cabergoline! I frantically phoned the clinic and they spoke to a dr and told me it would be fine but the info I read online mentioned cancer of the uterus so now I'm really concerned! X


----------



## silverbell

Hey stardust. Thanks. I had 4 on the right and 5 on the left. They said 4 would definitely be released, so they cancelled. My clinic only allow a maximum of 2.

Weird thing is I was on the same dose as last cycle ... but there you go. That's our stupid bodies, I guess. I'm half way through our funded 6 cycles now and have yet to have a proper cycle ... getting a bit scary now.

At least you checked with the docs there. I suppose we just have to assume they know what they're doing ... though sometimes that's a scary prospect! 

Hope AF shows up super-soon for you :witch:


----------



## Stardust1

Wow thats alot of follicles. My clinic offers follicle reduction if you have 3 or 4 mature ones, if it's more than that though they cancel as apparently it's quite an unpleasant procedure similar to egg collection, they pop the follicle with a big old needle! 
Are they going to give you progesterone suppositories to help with your short lp? X


----------



## theclarks8687

I had testing done to see if it was genetic. I also got AF this week. Alil early for me I think. So sorry to hear the cancelling.


----------



## silverbell

Stardust1 said:


> Wow thats alot of follicles. My clinic offers follicle reduction if you have 3 or 4 mature ones, if it's more than that though they cancel as apparently it's quite an unpleasant procedure similar to egg collection, they pop the follicle with a big old needle!
> Are they going to give you progesterone suppositories to help with your short lp? X

I would sooooo have taken up follicle reduction. I'm not bothered about the pain and it does sound terrible, but to have to abandon a cycle and then just sit and wait is horrible :nope: Yes, I was due to start Progesterone this cycle.



theclarks8687 said:


> I had testing done to see if it was genetic. I also got AF this week. Alil early for me I think. So sorry to hear the cancelling.

Ah, thank you for letting me know, clarks. I was intrigued. I'm so sorry :hugs:

So weren't you waiting for O and not AF? Could your loss have caused this? :hugs:


----------



## theclarks8687

I was hoping to catch my o before AF but I'm not stressing it. We weren't going to try this cycle originally and at last minute changed our minds cause my doc gave the ok.


----------



## silverbell

theclarks8687 said:


> I was hoping to catch my o before AF but I'm not stressing it. We weren't going to try this cycle originally and at last minute changed our minds cause my doc gave the ok.

Oh that sucks, I'm sorry :hugs: At least you know exactly where you are in your cycle now though. Keeping everything crossed for another really quick BFP for you :dust:


----------



## Stardust1

Hope everyone is ok today. Well it's CD1 today for us :thumbup: Scan booked for 8.15 tomorrow morning. I'm just praying there are no dastardly giant follicles laying in wait so this cycle gets cancelled as well. :help: I also really hope we haven't missed out on our donor as he was the only one that came close to my DH's characteristics and was cmv neg. :shrug:


----------



## theclarks8687

Why would you miss out on tour donor star?


----------



## Stardust1

theclarks8687 said:


> Why would you miss out on tour donor star?

The clinic has a very small donor list (14 last time we went) they are only allowed to create a certain number of families (can be more than one child per family) once they've reached the limit they come off the list, plus not many on the list were cmv negative which I am so we were limited with choice. My DH is 6'3" and only 2 donors were over 6'. I'm just praying his sperm hasn't made any babies in the past month :haha:


----------



## Stardust1

I'm very excited to say that everything went very well this morning, I've got a couple of 11mm follicles so hopefully they are left over from last month and will just shrink back down :thumbup: Done my first 2 injections and then I'm back for another scan on Friday. The nurse was just a little worried that i might overstimulate as my ovaries look quite crammed but I have everything crossed and really I'm just glad that we are back on the wagon as I've been feeling in such limbo since last october, Im in a such a good mood today now :flower:
Oh and our donor is still available and all booked for us :happydance:
Hope everyone else is doing ok. 
loads of :dust: to all you ladies


----------



## theclarks8687

Stardust1 said:


> theclarks8687 said:
> 
> 
> Why would you miss out on tour donor star?
> 
> The clinic has a very small donor list (14 last time we went) they are only allowed to create a certain number of families (can be more than one child per family) once they've reached the limit they come off the list, plus not many on the list were cmv negative which I am so we were limited with choice. My DH is 6'3" and only 2 donors were over 6'. I'm just praying his sperm hasn't made any babies in the past month :haha:Click to expand...

Aahh that makes sense here we only have like 3 or 4 major donor places bit the lost is a lil longer then 14. Money wise those lil vials cost 340+ and we would rather our friend be a donor and get more then one shot at it a month.


----------



## Stardust1

They use 3 vials per insemination at my clinic and it cost £300 for all the sperm, so not too bad I guess, I think thats about $600 x


----------



## theclarks8687

That Alil cheaper then here. Do you also have to pay for insemination or is that covered?


----------



## Stardust1

theclarks8687 said:


> That Alil cheaper then here. Do you also have to pay for insemination or is that covered?

Insemination is £900 for the initial attempt (goes down to £600 for future tries), and drugs are between £300 and £500. We paid about £1500 in total for this cycle including some one off fees. We were lucky to have a GP that did all our blood tests on the NHS so that saved us about £600. Do you pay alot for insemination in the States?


----------



## theclarks8687

Bout the same numbers but in dollars. It's so sad really, people who can afford to support a child but end up infertile can go broke just frying for a baby. So sorry I am a horrible texter


----------



## theclarks8687

So I may be out this cycle too. Got a smiley and my donor is MIA


----------



## Stardust1

theclarks8687 said:


> So I may be out this cycle too. Got a smiley and my donor is MIA

Oh no that's rubbish I'm so sorry :( :hugs: 
I've had a killer headache today, could barely open my eyes, I think it's the meds :(


----------



## theclarks8687

That's another reason why I'm possess cause I will have wasted a months supply of meds. So Sry to hear bout the headache. Anything you can do for it?


----------



## faithbabies

theclarks~ so so sorry to hear of your loss...i know how heartbreaking it can be.. hugs :hugs:

AFM~ havent been back in awhile..just havent been on the forums much. We are still doing home insem with known sperm donor...been thinking about going back to the fertility clinic in a few months if this doesnt work (which we really hate to do) fingers crossed this works so we dont have to. :dust: to all you lovely ladies here.


----------



## theclarks8687

Great to hear from you. I hope you don't have to go back to the doctor. Just remember we have the same chances as regular couple doing it at home so it may take up to 6 months but I hope not for both our sakes lol.


----------



## faithbabies

thank you theclarks! well we've been doing home insems since april 2011 :( but we're going into our 7th cycle with this donor so i dont know:shrug:


----------



## theclarks8687

Have you had an hsg? Or tried clomid with the home insemination?


----------



## faithbabies

theclarks~~ have done clomid for a few cycles but nope....and have not done hsg as I got bfp on my second iui thru my RE without any problem and she didnt recommend having one...also because my cycles are pretty regular, etc but i am 35 and at that "low ovarian reserve point" so that could be part of the problem....or it's just not the right time.


----------



## theclarks8687

I know its cliche but you gotta stay positive. That is what my DH keeps telling me anyways. And try the clomid with home insemination if its possible.


----------



## faithbabies

we start donations tomorrow....i probably wont get my surge for 2-4 more days after that but we start early...he will donate every other day until i say done lol this month we are going to go a little bit longer as i feel like i ovulated late last month. fxd!

dust to everyone. :)


----------



## theclarks8687

Yay I'm praying for you!


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## silverbell

Thinking of you all.

Faith - lots of luck this cycle :dust:


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## faithbabies

thank you TheClarks! and i'll say a prayer for you as well! we need all the dust and prayers and positive vibes we can get ;)

:dust:

thank you Silverbell...hugs to you :hugs:


----------



## Stardust1

Hi all, how's everyone doing? Hope all the uk ladies are enjoying all the jubilee celebrations x
My follicles hadn't grown at all today cd14 so my cycle has been cancelled, I'm so upset, it's the second cycle in a row to be cancelled now. I hate this feeling of limbo and that I am at the whim of the drs decisions. They are saying I'm going to have to up my dose of glonal f to 75iu daily next cycle and just pray it doesn't make my pcos go bonkers, which the nurse said is quite a strong possibility. If i get 3 follicles they will do a follicle reduction and if I get any more than 3 follicles they will cancel again. 
I'm beyond fed up now :(


----------



## theclarks8687

I'm so sorry you are having so much trouble star, are you going to try again in June?


----------



## drmscometru

Hello Ladies,
I felt compelled to share my story on this board after reading all of your posts. My story is very much like all of yours. My husband and I got married in our late 20's. We told ourselves we would wait a year before we started trying to have children, well we made it 6 months and then we were hard at work. We did everything a couple TTC does, ovulation kits, counting days, etc etc. After 6 months to no avail we still weren't pregnant. I assumed it was my fertility problem right? It's always the woman, turns out I got the dreaded call that most of us on this thread I'm sure have received. "Your husband has zero sperm count". What?!? Can it be a mistake? Maybe, come back in and let's retest. 3 sperm samples later we were looking at chromosome test results and learning what Klinefelters Syndrome was. We were told that we would never have biological children. To say we were crushed would be the wrong word that came later. Shocked and in disbelief maybe? How could this be true? My husband went through all the same emotions other women on here explain. He felt bad for me, asked me if I would leave him because I didn't sign up for this and he would understand. That time in our lives looking back seems like such a dark time, filled with tears and hurt, uncertainty, endless researching, paying fertility experts literally 10's of thousands of dollars to give us the miracle baby we were praying for that consisted of both our genes. We met with a world renowned Dr who assured us that if we did the TESA with Icsi that we could have our babies we dreamed of. My husband of course was willing to do anything. We went forward with his surgery, which looked terribly painful. All waiting on baited breath for the nurse to come in and tell us they found sperm. That day the nurse did rush in, in tears to tell us they have found sperm! We were overjoyed to say the least! We then followed up that procedure with a transfer after several of our embryos made it to day 3. We even had 1 to freeze. We were anxious to get the results of our transfer. I started spotting but tried to keep the faith. Unfortunately our first cycle was unsuccessful, it ended with the start of an early period. 

Onward and upward though right? We waited until my body could physically recover and scheduled our FET for the embie we had frozen. The transfer was a breeze, frozen is so much easier than starting over with fresh IVF cycle. This time no spotting, got my first beta and expected the worst but our prayers had been answered. We were pregnant! My betas kept coming back doubling and tripling! We were so unbelievably excited! 

Then the day came for our first ultrasound, that day I just had a sinking feeling in my heart. My cute husband tried to keep me upbeat and positive. As I laid there on the u/s table and the tech searched and searched for a viable pregnancy, after 5 minutes of looking we were told that there was no baby, just an empty sac. I had what was called a blighted ovum. I think going through that was harder then just a plain negative from day 1. 

We were at our darkest moment, no more embryos, my husband would have to go through the surgery again, we would have to come up with another 10k. We were sunk. Falling into a deeper and deeper depression I started looking into donor sperm. My husband and I talked about it for a long time, it was not an easy decision and there were times when we were both on different pages about it. 

It's so complicated when you're trying to decide in the beginning to go forward or not. You have so many questions, will being pregnant with a donor feel the same emotionally? Will special moments be tainted because you'll wonder how your husband is feeling and if he's sad? How often will it cross your mind? How will it affect the childs life? What will people think? Who will we tell? Family? or not even them? Goodness all of those questions seemed so important then....

But... I'm here to tell you that they aren't. 

Our second chapter in this is why I can tell you that confidently. We moved forward using donor sperm with IVF. I got pregnant the first time! We now have a beautiful, energetic, amazing little girl who is the love of our lives!!! More than we can explain! All of those burning questions fade so quickly when that baby gets here! If you are stuck in a bad place about using donor sperm I hope my story helps you. 

I wouldn't change our story for anything, truly. It made us so much stronger and now that we're through it and have our daughter we are just like every other family out there with a toddler. We're not thinking about donors, chromosomes, failure, right or wrong. Nope, we're thinking about potty training, big girl beds, and how in the heck we're going to get that binky away from her! Life is about so much more! I promise you all it gets better and when I say better I mean it. We are scheduled to start our next cycle in August and we are so excited! 

My heart goes out to all of you who are on here, and those who are reading but scared or embarrassed to reach out. I know now what you are going through seems so hard and it is but you will be lifted out of this and when that happens it will all seem like a distant bad dream.


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## theclarks8687

Thank you for sharing such a beautiful story.


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## silverbell

Stardust1 said:


> Hi all, how's everyone doing? Hope all the uk ladies are enjoying all the jubilee celebrations x
> My follicles hadn't grown at all today cd14 so my cycle has been cancelled, I'm so upset, it's the second cycle in a row to be cancelled now. I hate this feeling of limbo and that I am at the whim of the drs decisions. They are saying I'm going to have to up my dose of glonal f to 75iu daily next cycle and just pray it doesn't make my pcos go bonkers, which the nurse said is quite a strong possibility. If i get 3 follicles they will do a follicle reduction and if I get any more than 3 follicles they will cancel again.
> I'm beyond fed up now :(

I am so, so, so sorry star :nope: I've had 1 cycle abandoned and it was absoultely horrendous to deal with. Just that stupid 2ww with nothing happening. Us KS sufferers are used to the waiting, but once you start treatment you just want to keep going - we've had enough of the waiting already. I can't imagine how you must be feeling. Hopefully they'll keep a very close eye on you with lots of scans next time around so they can ensure your ovaries 'behave' with the higher dose. At least your clinic with do follicle reductions - I soooo wish mine offered that.

Thinking of you and knowing there's nothing I can say to make you feel better. Hope the next couple of weeks flies by for you - try and do things you enjoy and that fill your time. I personally found it made the time go more quickly.



drmscometru said:


> Hello Ladies,
> I felt compelled to share my story on this board after reading all of your posts. My story is very much like all of yours....
> 
> Our second chapter in this is why I can tell you that confidently. We moved forward using donor sperm with IVF. I got pregnant the first time! We now have a beautiful, energetic, amazing little girl who is the love of our lives!!! More than we can explain! All of those burning questions fade so quickly when that baby gets here! If you are stuck in a bad place about using donor sperm I hope my story helps you.
> 
> I wouldn't change our story for anything, truly. It made us so much stronger and now that we're through it and have our daughter we are just like every other family out there with a toddler. We're not thinking about donors, chromosomes, failure, right or wrong. Nope, we're thinking about potty training, big girl beds, and how in the heck we're going to get that binky away from her! Life is about so much more! I promise you all it gets better and when I say better I mean it. We are scheduled to start our next cycle in August and we are so excited!

What a fantastic post. Thank you so very much for sharing this beautiful story, drmscometrue :cloud9: I'm sorry you had to go through all that heartache, but it's so lovely to hear how it all turned out in the end and certainly it's reassuring for me and I'm sure for the other ladies on here going through donor insemination/IVF. Thank you and I'm so pleased to hear you have such a lovely little girl to fill your lives with happiness.


----------



## Stardust1

Agreed, fabulous story made me cry, it's sounds like you've had so many knocks but it just shows that we can't loose hope. Thank you for that xx

Thanks theclarks8687 and silverbell your support means so much to me. we are trying again as soon as af arrives they may give me provera in a week or so as they are not sure I'm gonna get af naturally as my lining is so thin. I've got to wait for a call on Friday after the drs have reviewed my case. X


----------



## theclarks8687

Is it normal for your lining to be thin?


----------



## Stardust1

No but then my cycles are quite long (up to 50 days at times) and my average ovulation day is cd24 so my lining usually has a lot longer to build up, i guess its just a sign of me not responding to the drugs. The nurse said that now I've just stopped the gonal f everything will shrink back down so she wasn't sure I'd bleed at all. They said to wait a week or two and they'd either rescan me and start afresh if my lining is still thin or start provera to induce af. It kinda confused me a bit, but I guess they know what they are doing.


----------



## theclarks8687

Wow I'm sorry you are having to go trough all that. I was lucky in the fact that my cycle was normal and 30 days long with oing midway but with the fibroids I had to be on painkillers to get through a period. Now I wish I had the pain if meant a normal cycle again. I haven't had one since the mc.


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## Stardust1

Im sorry you suffer so much with fibroids, sounds horrible. Have they given you any explanation as to why your cycle hasn't sorted itself can they induce af? I've never ever had regular cycles, in fact I only had about 5 periods until I was about 21 due to my pituitary tumour, I'm now as normal as I'll ever be due to the drugs I'm on but unfortunately it's resulted in me now having osteopenia in some of my bones due to lack of estrogen, some days I just think enoughs enough, I'd like a little bit of good luck now and again. I work in a secondary school and in the last 2 weeks I've found out about 3 girls that are pregnant, they are not mature sensible girls, in fact one is verging on being a bit bonkers and is in care herself, these little babies are not going to have happy starts in life :( one is only 14 the others are 16, I just don't understand why the world is so unfair at times. I must have been a nasty person in a past life if karma is chucking all this back at me!
I've had some spotting this morning, cd16, I've no idea what that's all about????


----------



## theclarks8687

Omg I have a 19 yr old girl in my life who is living in a crack trailer that the inside is covered with dog feces and roaches. Her bf who she's been dating for 6 months is an unemployed wannabe dapper and they live with his mother. Just found out 2 weeks after my mc that she pregnant and due in Dec. I try really hard to not get resentful at God for things like this. But it is very hard at times.


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## silverbell

If any of you find the cure to not being resentful and jealous of people who are pregnant who don't deserve to be/don't appreciate it ... please let me know!

Thinking of you all. Stardust and clarks, I do hope AF is just around the corner for you.


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## theclarks8687

Lol I wish I knew, and u try not to be resentful, I really do, it is just hard sometimes when I see certain things.


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## clarkea

Hi Ladies, how are you all doing? 
Im so sorry to hear that things havent gone as planned for some of you. 
The stors that dreams can come true wrote was inspirational. The fact that they found some sperm is a hope for me. 
My DH and i have an app on 26th of this month, we get to find out a date for his op for sperm retrieval. i hope so much that its quick as we only ever moved hospitals as they said there was no waiting list. But here we are again waiting!!! 
I never used to think i had much patience but i must have hey?
My sister gave birth a few weeks ago to a prem baby. Only 2lb 6oz. Shes still in the hosptial and will be for a while. When i found out she was pregnant it hurt a bit but not too much as she had been trying for years to have a baby so she knew to some extent how hard it is when you really want a baby.
I have two girls in my office at work who are pregnant. When i found out they were pregnant i was devestated as they both said they didnt want kids. I then found out that my brother in laws girlfriend is pregnant which totally hurt. i know it might be selfish but i cant help but feel probably the same as most of you feel. 
I just bought a house so trying to concentrate on that while we wait for app's. 

i do have hope that they will find sperm when they do the retrieval. 

You girls as so much further down the line that i am so when your saying some things i dont understand lol. 

baby dust to all you lovely people xxx


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## theclarks8687

You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.


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## clarkea

theclarks8687 said:


> You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.

i think you still have to have hope. My DH levels were fine? Slightly higher but still in the normal range. They told us that there is only a 3% chance of finding some but i always think, why cant we be in that 3%. 
We have been told different things by different doctors. Firstly that we have 0 chance of having a boy if we get pregnant and then another doctor said its 50/50. 
I dont think anyone knows tbh exactly what goes on.
They have said when they do the sprem retrieval that it might knock something out and then hmy DH would have to be on injections for the rest of his life to balance out his hormones. 
They have said its very very risky but we decided that its a risk worth taking.

whats going to happen at your meeting then?do you know?


----------



## silverbell

clarkea said:


> My DH and i have an app on 26th of this month, we get to find out a date for his op for sperm retrieval. i hope so much that its quick as we only ever moved hospitals as they said there was no waiting list. But here we are again waiting!!!
> 
> i do have hope that they will find sperm when they do the retrieval.

I hope they find sperm for you too, clarkea. 26th will soon be here.



theclarks8687 said:


> You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.

It's so strange the different things we all get told. DH's FSH was in the mid 30's and sometimes 40's and he had a Testosterone of 9. Our specialist - Mr Ramsay, the best Consultant re azoospermia in the UK - said that the high FSH is actually a good sign and shows that the body has recognised a problem and is trying to rectify it. In fact, because my DH's FSH was so high it meant he didn't need to be put on medication to try to improve/increase any sperm production going on.

We were also told by Mr Ramsay that men with KS in his experience have a 5% chance of finding sperm (going by his microTESEs performed). We were obviously warned the chances were there would be nothing ... and there wasn't. But we're both glad we knew for sure before embarking with donor sperm.

DH has an appointment with a Genetics Specialist next week in order to find out more about KS and what it will mean for him in the future. I'll be sure to report back here if I find anything interesting.

As for me I just had my 3rd IUI yesterday, having had 2 failed cycles and an abandoned one last month due to overstimulation. Fingers crossed this time. It's now been over 1 year since we found out about the azoospermia and almost 2 years since we started TTC. Feels like a lifetime.


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## theclarks8687

Clarkea, you should definently be hopeful, you never know 

Silverbell, that is interesting because we were pretty much told the opposite about the fsh, I'm looking forward to the specialist we are seeing at the end of the month to get more info which I will also share. But we really don't have much hope because two docs have told us our options are pretty much adoption and ds, and I really pray you get your bfp hun!


----------



## theclarks8687

I've never been so excited to get a "normal" period in my life lol but I got one today. Yay me.


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## silverbell

theclarks8687 said:


> I've never been so excited to get a "normal" period in my life lol but I got one today. Yay me.

Great news, clarks! :happydance:


----------



## Stardust1

Yay clarkes you must be so happy. I'd be fascinated to hear any info you guys get from the klinefelters specialists my dh was offered no assistance or advice at all when we were discharged from the NHS clinic. I am due to see my endocrinologist next Monday which is my yearly check for my prolactinoma so I'm gonna ask him what he recommends my dh does next.


----------



## silverbell

Well I attended DH's genetics appointment today about KS and I think he found it really reassuring.

He has had it confirmed that he's not going to die early or have any other significant medical nightmares looming ahead in his future. The only real problem that he needs to be aware of is the increased risk of osteoporosis and this is due to the low Testosterone with all KS men (due to the inadequate testes development). As my DH has already had a normal bone scan he now knows he's got nothing to worry about at present and even going on Testosterone isn't as urgent right now as his Endocrinologist had suggested. Though it's still recommended to avoid bone problems in the future.

She confirmed KS was a complete fluke and the only thing they've managed to notice about it is that there is an increased incidence of KS born to older mothers due to the egg quality deteriorating with age (DH's wasn't an older mother).

KS sufferers always have a raised FSH and this is because the body has recognised the problem and is trying to sort it out. This level will remain raised even with Testosterone replacement, apparently, and is nothing to worry about.

Any sperm found in the few select men with KS to produce sperm (very small percentage - most unfortunatley don't produce any) can indeed carry that extra 'x' chromosome, so the condition could be passed on again. It would need to be checked for preimplantation genetic diagnosis prior to ICSI and IVF if you want to be sure KS isn't passed on.

She said it's important for DH not to feel any different and he's still a healthy man who functions normally (other than no sperm and low Testosterone) and is expected to live as full and healthy a life as most other men. 

I can't remember anything else - think that was it. Obviously we didn't talk too much about sperm because we know we don't have any in our case.


----------



## clarkea

silverbell said:


> Well I attended DH's genetics appointment today about KS and I think he found it really reassuring.
> 
> He has had it confirmed that he's not going to die early or have any other significant medical nightmares looming ahead in his future. The only real problem that he needs to be aware of is the increased risk of osteoporosis and this is due to the low Testosterone with all KS men (due to the inadequate testes development). As my DH has already had a normal bone scan he now knows he's got nothing to worry about at present and even going on Testosterone isn't as urgent right now as his Endocrinologist had suggested. Though it's still recommended to avoid bone problems in the future.
> 
> She confirmed KS was a complete fluke and the only thing they've managed to notice about it is that there is an increased incidence of KS born to older mothers due to the egg quality deteriorating with age (DH's wasn't an older mother).
> 
> KS sufferers always have a raised FSH and this is because the body has recognised the problem and is trying to sort it out. This level will remain raised even with Testosterone replacement, apparently, and is nothing to worry about.
> 
> Any sperm found in the few select men with KS to produce sperm (very small percentage - most unfortunatley don't produce any) can indeed carry that extra 'x' chromosome, so the condition could be passed on again. It would need to be checked for preimplantation genetic diagnosis prior to ICSI and IVF if you want to be sure KS isn't passed on.
> 
> She said it's important for DH not to feel any different and he's still a healthy man who functions normally (other than no sperm and low Testosterone) and is expected to live as full and healthy a life as most other men.
> 
> I can't remember anything else - think that was it. Obviously we didn't talk too much about sperm because we know we don't have any in our case.

Thats what we were told at our Endocrinology appointment.
It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR. 
THey keep trying to get us to go to another app but not much point until after sperm retrieval.


----------



## silverbell

clarkea said:


> Thats what we were told at our Endocrinology appointment.
> It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR.
> THey keep trying to get us to go to another app but not much point until after sperm retrieval.

This was an actual clinical genetics appointment - seperate to Endocrinology - as DH wanted a genetic specialist's view and knowledge because our Endocrinologist only really seemed interested in getting him put on Testosterone. DH had seen the Endocrinologist prior to sperm retrieval, but obviously - like you say - there was no point seeing him again until afterwards because he couldn't go on Testosterone until after the sperm retrieval anyway. So DH has been with the Endocrinologists for a few months prior to the retrieval, but this was a genetics appointment specifically for a discussion about KS and the implications which DH had requested.

Sorry if I hadn't made it clear.

Do you know when the SSR will be done? EDIT - sorry I had a look back as I could have sworn you'd said and I see you have an appointment in 2 weeks and should get more of an idea. Hope it's not too long for you both.


----------



## theclarks8687

I had read before about the older mother thing and DH's mom was in her early twenties so I knew we kinda through that idea out the window. Our appointment is also in two weeks and it will be interesting to compare notes.


----------



## clarkea

silverbell said:


> clarkea said:
> 
> 
> Thats what we were told at our Endocrinology appointment.
> It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR.
> THey keep trying to get us to go to another app but not much point until after sperm retrieval.
> 
> This was an actual clinical genetics appointment - seperate to Endocrinology - as DH wanted a genetic specialist's view and knowledge because our Endocrinologist only really seemed interested in getting him put on Testosterone. DH had seen the Endocrinologist prior to sperm retrieval, but obviously - like you say - there was no point seeing him again until afterwards because he couldn't go on Testosterone until after the sperm retrieval anyway. So DH has been with the Endocrinologists for a few months prior to the retrieval, but this was a genetics appointment specifically for a discussion about KS and the implications which DH had requested.
> 
> Sorry if I hadn't made it clear.
> 
> Do you know when the SSR will be done? EDIT - sorry I had a look back as I could have sworn you'd said and I see you have an appointment in 2 weeks and should get more of an idea. Hope it's not too long for you both.Click to expand...

no its clear, i just get mixed up as weve been to so many, we have had endocrinology apps and the genetic specialist app. Roll on next Tuesday!


----------



## clarkea

theclarks8687 said:


> I had read before about the older mother thing and DH's mom was in her early twenties so I knew we kinda through that idea out the window. Our appointment is also in two weeks and it will be interesting to compare notes.

same here my dh mother was young too. 
good luck for your app, our app is hopefullty to get a date on ssr.


----------



## Shocked4sure

Hi there, 45 years old and married just over a year ago, Like many others my wife thought she has the issues ttc. imagine my shock as I learned that I had Klinefelters. What a loss I feel, though we will try to extract sperm from my testes I know the likelihood is less than 20% according to a top urologist. My wife and I know it's not ideal but our only option is sperm donor. My wife is excited, and I try to be too but I'm just devastated. She doesn'T see me differently, or think less of me but I just feel sad. It feels like a death almost ....a deep loss for what might have been...could have been...should have been like others who decide to have a family. I am not one to say ..why me .... But I just wish it was different. Will I have the same bond with a sperm donor baby ..I hope so ...I'm sure I will...but I'm just sad..."stumbled across this site and thought I'd post. I should say I hv few symstoms of klinefelters..shy quiet kid...minor reading difficulties, small testes, little extra weight gain in hips (thought that was inherited)..... anyway ..in sept we will try to extract sperm...wish me luck..as we will need a sperm donor back up too...things could be a lot worse I guess....:(


----------



## theclarks8687

I'm sorry you are having to deal with this. My hubby has had a lot of those same feelings. I rarely see my DH cry in 6 yrs but he cried over the loss of biological children. I k.ow men are supposed to be tough but with things like this no one is tough. I wish you all the lick in the world in September.


----------



## Shocked4sure

Thank you for your well wishes. Today has been a better day. since I just signed up here I'm unfamiliar with your story other than seeing a post saying two docs said adopt or sperm donor......how do you feel about. How does your dh feel about sperm donor......my wife thought I should be the one that selects the sperm donor ...which is great and I will review it with her anyway but it helps me know I had a piece in creating our baby ....not the way I,d wish it went down .....but still I'd have that connection........thanks for listening..tom


----------



## theclarks8687

We have decided to go the sperm donor route. I had originally told my DH the same thing about about him picking. But in the end we used a friend of ours. We got pregnant once in Feb but miscarried in April. So we are back to trying again with a known donor.


----------



## Shocked4sure

Well I wish you all the luck in the world ...as they say ..good things come to those who wait.


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## theclarks8687

So ladies how are we doing this week? And it is official getting pregnant is not really my problem, now staying pregnant is a whole other thing.


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## Stardust1

:happydance: Oh that's wonderful news you must be thrilled :happydance: I have till next Friday which is my official test date but I've been testing every day to see when my hcg trigger shot is out of my system as I'm terrified about getting a false positive! 
:dust: here's to a happy and healthy 9 months for you, I have everything crossed and I'm so pleased for you after everything you went through :dust:


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## theclarks8687

I appreciate that star and I pray you get a sticky bean for yourself!


----------



## Stardust1

Theclarks8687 I'm so sorry you've had another loss :hugs:You must be heartbroken. :hugs:


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## theclarks8687

It was so early and I had prepared myself for the worst that it wasn't as bad. But congrats to you! I'm so happy for yall


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## Stardust1

theclarks8687 said:


> It was so early and I had prepared myself for the worst that it wasn't as bad. But congrats to you! I'm so happy for yall

Thank you, I'm in complete denial at the moment, can't get my head around it at all, I had resigned myself to it never happening.
Again I'm so sorry for your loss :hugs:


----------



## silverbell

Sorry I've been AWOL girls, but I've been away from BnB and had a break from IUI too.

Massive congratulations, stardust. What wonderful news :flower: I'm so pleased for you. You must both be over the moon.

theclarks, I'm so sorry for you :nope: Are they going to do anything about the miscarriages? Tests or something? Are you on Progesterone? Thinking of you :hugs:


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## theclarks8687

No I'm not on anything and I think they are going to wait for a third to do any real testing.


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## silverbell

theclarks8687 said:


> No I'm not on anything and I think they are going to wait for a third to do any real testing.

Oh I see. Well I pray it will never come to that and that you've just been unlucky so far. :dust:


----------



## theclarks8687

I appreciate that, what about you? What do you have planned now after your break?


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## Stardust1

Thank you Silverbell, we are both thrilled although I do feel quite detached from the situation still. I'm not sure if it's a subconscious self protection thing in case something goes wrong, but apart from a lot of nausea at night and twinges I don't feel the slightest bit pregnant, I feel like an imposter and someone's going to come along and tell me I imagined the whole thing! I have my first scan on the 7th August so I'm sure I'll be more confortable and relaxed about the whole thing then. 
Are you guys tying again this month? :dust:


----------



## silverbell

theclarks8687 said:


> I appreciate that, what about you? What do you have planned now after your break?




Stardust1 said:


> Thank you Silverbell, we are both thrilled although I do feel quite detached from the situation still. I'm not sure if it's a subconscious self protection thing in case something goes wrong, but apart from a lot of nausea at night and twinges I don't feel the slightest bit pregnant, I feel like an imposter and someone's going to come along and tell me I imagined the whole thing! I have my first scan on the 7th August so I'm sure I'll be more confortable and relaxed about the whole thing then.
> Are you guys tying again this month? :dust:

Thanks for asking both.

Yep, we're trying. Been injecting since Saturday so the scans will be starting again from Thursday this week. Praying for 2 nice follies that grow super-quick so we can get into the 2ww and relax.

Stardust, I imagine lots of ladies feel this way - particularly those who have waited a long time to get to that stage. 7 August will soon be here :hugs:


----------



## theclarks8687

It's that time again. Should be getting a smiley soon so started AI tonight....


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## luckdragon

Lots and lots of luck this time silver I really hope it works for you And hope your ok lots of love and babydust xxxxxxx


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## silverbell

silverbell said:


> Yep, we're trying. Been injecting since Saturday so the scans will be starting again from Thursday this week. Praying for 2 nice follies that grow super-quick so we can get into the 2ww and relax.

Flamin' eck, I got my wish! I'm going for my 4th DIUI tomorrow :dance: Super-fast growing follies this time around and it looks like there's a potential for 3 eggies too, so have been warned re triplets :wacko: (though this is unlikely).


theclarks - thinking of you and sending lots of :dust: your way.


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## theclarks8687

Go silver! I got my smiley today so hopefully my donor can make it tonight but I got two donotions in the last two days so hopefully something takes.


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## silverbell

theclarks8687 said:


> Go silver! I got my smiley today so hopefully my donor can make it tonight but I got two donotions in the last two days so hopefully something takes.

Awesome news!  If he can't make it today, is tomorrow any option?

Great to have a 2ww buddy x


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## theclarks8687

I'm gonna push for tomorrow too but unfortunately he works doubles today and tomorrow.he did say he will be here tonight


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## silverbell

theclarks8687 said:


> I'm gonna push for tomorrow too but unfortunately he works doubles today and tomorrow.he did say he will be here tonight

Excellent - hope all went well :happydance:


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## theclarks8687

I hope today goes well for you! Everything went alright last night, so now its wait time.


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## silverbell

Yes all went well and pleased to hear it went well for you too. Fingers crossed for us both x x x


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## Stardust1

Wishing you both all the luck in the world x x x
:dust:


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## theclarks8687

Now the 2ww....hopefully I stay busy


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## luckdragon

good luck guys sending babydust your way xxx


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## theclarks8687

So I'm having an internal struggle bout something. Whether o tell my DH right away or not. He handled the last one worse then me. So I'm wondering if I am blessed enough to get a bfp, if I should hold off on telling him.


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## silverbell

I personally couldn't do that Clarks. I just think he should have as much input and knowledge about all this as is possible - more so than the average man for obvious reasons. If something were to happen I imagine he'd be devastated and hurt that you'd kept him from it? 

I can understand your reasons but I personally think honesty is always the best policy. But I don't know you or your DH and of course this is a decision you'll have to make alone. :hugs:


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## theclarks8687

DH and I are usually 100% all the way honesty. Sometimes probably Alil too much. And I know that it will be hard to keep shushed. But I did speak it over with him and let him decide. He said he wanted me to wait. You have to understand, he is the manic depressive with suicidal thoughts when he is not taking his meds. So he is ultra sensitive which is why I even questioned it. Last I told him I was pregnant and he said ok....he doesn't want to put his heart into it so early to loose all over again.


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## silverbell

theclarks8687 said:


> DH and I are usually 100% all the way honesty. Sometimes probably Alil too much. And I know that it will be hard to keep shushed. But I did speak it over with him and let him decide. He said he wanted me to wait. You have to understand, he is the manic depressive with suicidal thoughts when he is not taking his meds. So he is ultra sensitive which is why I even questioned it. Last I told him I was pregnant and he said ok....he doesn't want to put his heart into it so early to loose all over again.

Ah, there you go and that's exactly why I said I didn't know you guys. Everybody and everybody's relationships are different.

I'm glad you spoke to him about it - that's perfect and you've got the answer you wanted :hugs:


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## clarkea

Hi Everyone, you all sound like uv been very busy. hope everyone is doing well.
Just thought id let you know that we have been given a date for sperm retrieval. End of Nov. 
The doctor says he's waiting for his first pregnancy to happen this way. Maybe the first will be me, i hope so anyway.
:)


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## theclarks8687

Good luck hun hope it goes well!

I'm just waiting to O again. Last month didn't take and I'm starting feel like it won't happen before my original due date. I don't wanna know how that will feel when it comes and I'm still not pregnant.


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## clarkea

theclarks8687 said:


> Good luck hun hope it goes well!
> 
> I'm just waiting to O again. Last month didn't take and I'm starting feel like it won't happen before my original due date. I don't wanna know how that will feel when it comes and I'm still not pregnant.

oh hun you have got to keep your chin up. I know it must so hard for you but try and keep those positive thoughts in your head. 
You have got to keep trying and you will but in the meantime try and be positive. I know your at a different stage to me at the moment but i realised the other week that in between all the emotions of KF and what it is doing to me and my DH i forgot to live in between doing the things i want to do before a beautiful baby comes along.
I want a baby more then anything but have realised that while we go through the journey we might as well try and enjoy ourselves.
I am a big believer of it will happen when the time is right. Even though i think i am not patient i must be ...alot lol.
It will happen to you, just keep your fingers crossed xx


----------



## theclarks8687

Thank you I appreciate that, and we are doing things we wouldn't be able to with a kid, like spur of the moment trips to the casino and what not.


----------



## theclarks8687

Well its get is AI time of the month again so wish me luck....how is everyone else doin?


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## silverbell

Good luck, clarks, hope this is it for you :dust:

I'm on 8dpiui and will know whether this is going to be our 5th failed cycle or not this weekend :wacko:

Really scared it's going to be another negative, but praying and hoping and wishing so much that it won't be.


----------



## theclarks8687

About a week ago I had a really rough day, I was so scared to start this cycle over again and put all the energy into it, just to get disapointed again. And my hubby talked me down


----------



## clarkea

silverbell said:


> Good luck, clarks, hope this is it for you :dust:
> 
> I'm on 8dpiui and will know whether this is going to be our 5th failed cycle or not this weekend :wacko:
> 
> Really scared it's going to be another negative, but praying and hoping and wishing so much that it won't be.

good luck Silverbell. fingers crossed for you. :hugs:


----------



## clarkea

theclarks8687 said:


> Well its get is AI time of the month again so wish me luck....how is everyone else doin?

good luck clarks :hugs::hugs:


----------



## luckdragon

Good luck everyone xxx


----------



## silverbell

5th failed IUI for me, ladies. We're on our last one now before facing IVF ... which is crazy considering there's nothing actually wrong with me or the donor sperm! :wacko:


----------



## theclarks8687

Remember when using donor sperm IUI your chances aren't much higher then a normal couple bding, I think its like 50% inthe first 6 months and 80% in a yr. I have to remind myself that after every failed cycle.


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## luckdragon

Silver I had ivf treatment with donor sperm and there's nothing wring with me either, The clinic I went to said it had a better success rate. I only had one embryo out back as well. It wasn't bad to go through the only difference was egg
Collection and that was fine I even gave half my eggs to help someone else! Really wishing you lots and lots of love and baby dust for what ever you decide to do next xxxx


----------



## silverbell

Thanks, luckdragon :hugs:

I guess I just think of IVF as being needed for those with known problems, but actually I'm quite excited about it now I've thought about it and looked into it a little more and knowing that there is increased chance of pregnancy. Much more than with IUI. 

I want to do egg-sharing too. I'd love to 'give back' and help a couple out with the opposite problem of what we have.

Thanks for the encouragement x


----------



## theclarks8687

Well ladies, on to another cycle, got my smiley and my donor all within a few hrs so maybe ill be able to announce at Christmas this yr.


----------



## Hoping4our1st

hi, i'm on a new thread now. my husband has done 2 sperm analysis both less than 1 million, his testosterone is low, high FSH and the urologist said he has smaller than average testicles.

i'm not an expert but think he has mosaic (which i think means a lesser form) of Klinefelter's syndrome. my husband has a moderate to severe learning disability, he's very tall, he had asthma as a kid and has a slight hearing problem in one ear. he's a hairy guy, has no libido problems but i think he meets the definition. 4 yrs ago he did get a sperm count done and it was fine. he's trying to track it down though. i sure would like to see it to know for sure.

just wondering if anyone has a success story of using their husband's sperm and having a healthy child.

this has been going on for over a month now, all i've done is read the fertility forums and research. now i think he has Klinefelter's so i'm willing to do donor sperm but i am sure unhappy about it. it's very devastating, i'm having a hard time with this. thank you


----------



## theclarks8687

A simple chromosome test will solve your answer and until then there is no way to know. But keep calm and honestly Google is the devil when trying to figure out medical stuff lol you may not have to use donor sperm, and honestly its rare to find any ks patients with any sperm.


----------



## Hoping4our1st

Hi, it sounds like a long journey so far. can you please explain more about what you've written that if he is 47xxy he cannot have a boy only a girl? did you find out if he is mosaic Klinefelter's? i think my husband is that based on his smaller than average testicles per the urologist, my husband is 6'3.5", has a moderate to severe learning disability, has low free testosterone, high FSH. he is a hairy guy with no libido problems but i'm pretty sure he has this diagnosis, we get his karyotype/chromosome test results in feb.



clarkea said:


> Heres my story so far, if i can remember its been that long!
> 
> I have been ttc with my DH for 7 years. I went for test after about 1 year as nothing was happening. My tests came back clear so decided to just carry on trying. My doctor told me we wernt trying hard enough! Can you believe that lol
> After 5 years with still no luck (we left it this long as it took my sister so long to concieve i thought it was me!) we went back to the hospital to see what we could do. They advised to get DH tested. Sperm test came back with zero sperm! Doctor asked he the test was done right! how can you possibly do it wrong!
> Did another test. doctor said it was lost in transit! worrying! Did another test was told to again zero sperm. He wasnt very nice about it either!
> Referred to St Marys Manchester, did a load of tests! each with months apart. Taking too long!
> Looked up last night and was diagnosed in Feb 2011.
> Was told that we need sperm retrieval, PGD and IVF. but that it all needed to be done in London at Thomas and St Guys as they dont do PGD anywhere else.
> Was told to quit smoking and go back in 2 months. so we did and went back, doc said they will put us on the list for sperm retrieval. Once we had this done at Mancehster we would go straight to LOndon for OGD and IVF. They also said that we would never concieve a boy as he would def have xxy. We got told only a girl.
> 
> Went to an endocrinology app in Oct 11 who looked at my DH and said are you sure they confirmed xxy as he looks so normal (good muscle build) testorone level normal etc...
> They said he might by mosaic (some xxy and some xy), and that even if his tests came back that he was 47 xxy he probably wouldnt be as they only test a certain part of your blood/sperm. There was no way of them checking all parts so that why if they dont see any normal xy in one smple then they just call you 47 xxy.
> 
> Then received a letter to say that he wasnt mosaic on paper but could still possibly be!
> How messed up is that (gave us hope though)
> 
> Went to a Genetic councelling app in Jan this year who didnt help one tiny bit! He said he hadnt had to deal with this before and wasnt very clued up on xxy.
> He did say though that it is possible for us to have a boy if they get sperm. It was 50/50. that was good news for us as the thought of not having a boy was not nice. Although i would be very happy with a girl. :)
> 
> He said that the process was taking too long and that he would find out where we were up to and let us know!
> 
> Two weeks after app and not hearing anything at all from anyone i phoned up Manchester hospital to see if we were near the top of the list as we were told 1 year waiting list.
> They said we were no 40 and they only do 2 a month as the doctor has other commitments! It would prob be next year now!
> 
> This obviously wasnt acceptable as i was ready to become a mum 7 years ago! the thought of waiting another year i couldnt cope with so i phoned Liverpool womens hospital to see how long their waiting list was.
> They said no waiting list so i phoned Manchester to see if we could get transferred.
> They said it would take 1 - 2 weeks to do this.
> I phoned 1 week later to make sure everything was going smoothly and they said they hadnt done anything as they need to apply to their funding dept! Its not funded by my PCT its funded by theirs.
> They said they would do it that day but the big guys only have a meeting once a month so not sure how long it would take.
> 
> We are now just waiting to be transferred over so we can start the ball rolling.
> 
> Sorry this is quite long, i have a lot to tell lol


----------



## Hoping4our1st

Hi, i've been reading on the liklihood of an abnormality passed on from a man with Klinefelter's. it seems they can't pass on Klinefelter's but can pass on problems with the baby like downs syndrome and other problems. here is what i found. i tried to clean it up, sorry i'm just having a hard time with this but want to post what i found in case others are trying to find it.

Most cases of triple X syndrome are not inherited. The chromosomal change usually occurs as a random event during the formation of reproductive cells (eggs and sperm). An error in cell division called nondisjunction can result in reproductive cells with an abnormal number of chromosomes. For example, an egg or sperm cell may gain an extra copy of the X chromosome as a result of nondisjunction. If one of these atypical reproductive cells contributes to the genetic makeup of a child, the child will have an extra X chromosome in each of the body's cells.

https://atlantichealth.dnadirect.co...me-abnormalities.html?kNuQr1exkv93ey1yY2VxSFu
Because boys with Klinefelter syndrome usually produce lower than average levels of the male hormone testosterone, some have physical characteristics such as small testicles and a smaller amount of facial and body hair. Men with Klinefelter syndrome tend to be either tall and lanky or more rounded with mildly enlarged breast tissue (called gynecomastia). Klinefelter syndrome does not seem to affect sexual orientation or gender identity.

Klinefelter syndrome can occur in males regardless of ethnic background or family history. It is caused by a genetic change that happens by chance, and is usually not passed down through generations of a family.

About 1 in 5 (20%) men with Klinefelter syndrome, have chromosome results that aren't simply one extra X chromosome. Other possible results include:
	Mosaic Klinefelter syndrome (46,XY/47,XXY), which happens when some cells have an extra X chromosome and some cells do not.
	More than one extra X or Y chromosome (48, XXXY; 48,XXYY; or 49,XXYY)
	Extra X chromosomes that have an abnormal structure
While there is no cure for Klinefelter syndrome, treatments like testosterone supplements can help lessen symptoms, especially when started at puberty. Most men with Klinefelter syndrome will need help from intracytoplasmic sperm injection (ICSI) to become a biological father. This technique is successful in over half of men with Klinefelter syndrome. *Most children born to men with Klinefelter syndrome have had normal chromosomes, but there may be a higher chance to have a child with a chromosome disorder.* If a man with Klinefelter syndrome is not able to have a biological child, other options (including sperm donor, adoption, and remaining childfree) can be considered.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)05201-6/abstract
Intracytoplasmic sperm injection (ICSI) has given some patients with Klinefelter's syndrome (ie, men with an XXY sex-chromosome profile) the chance to become fathers, but the genetic makeup of the spermatozoa used for the injection is a concern. We studied the segregation of the sex chromosomes and chromosomes 1 and 21 by multicolour fluorescence in-situ hybridisation in a patient with non-mosaic Klinefelter's syndrome who was a candidate for ICSI. *As other workers have found, we saw a higher rate of 24,XX and 24,XY spermatozoa in the patient than in controls. However, we also found a much higher frequency of disomy 21 in the spermatozoa of this patient than in controls (62 vs 04%). Any child conceived by ICSI using this man's sperm will thus have a proportionally higher risk of trisomy 21 (Down's Syndrome)*

Non-mosaic Klinefelter patients are generally azoospermic due to primary testicular failure

https://www.aafp.org/afp/2005/1201/p2259.html 
Klinefelter syndrome has been identified in 0.4 percent of boys with special education needs 

Mosaicism occurs in 15 percent of men with an additional X chromosome and generally results in a milder phenotype. When mosaicism occurs, cells with two or more karyotypes are distributed. Most often, a normal chromosome number (46,XY) is identified in cells from a sample that also contains hyperdiploid cells (i.e., a Klinefelter or Klinefelter variant karyotype). In standard venipuncture, however, the ratio of normal to hyperdiploid white blood cells is not reflective of all tissues, and the phenotypic severity cannot be anticipated.
Although there have been multiple reports of successful fertilization by men with Klinefelter syndrome, genetic counseling is essential because of the increased risk of autosomal and sex chromosome abnormalities

Sex Chromosomal Abnormalities are conditions that are compatible with survival unlike other chromosomal abnormalities. These disorders too can be detected through prenatal screening as in the case of Down syndrome. Diagnosis can be confirmed by a karyotype using a blood sample.

-Turner syndrome	1 in 2,500 to 5,000	
Presence of only one X chromosome instead of two	
Lack of proper sexual development,proportionate short stature, improper ovarian development, broad-webbed neck, broad and shield like chest, structural defects of the heart and kidney, triangle-shaped face, posteriorly turned ears. No Treatment Available

-Klinefelter Syndrome	1 in 1,000	
Presence of an extra X chromosome in the male	
Taller than average, small testis, sterility of the affected male, low I.Q, gynaecomastia, males with the condition are prone for breast cancer.	
Removal of excess breast tissue can be carried out.Testosterone therapy is usually given.

-Super females	1 in 1,000	
Presence of an three X chromosomes in the female than the normal 2	Tall and well built figure, mild mental ******ation, the degree of mental ******ation and physical abnormality increases with each X chromosome, sterility, and menstrual abnormalities.	
Correction of symptoms or abnormalities associated with the condition 

-47, XYY Karyotype Normal population: 1 in 1,000, Tihar Jail: 1 in 30 
Presence of an extra Y chromosome in the normal male	
Low level of I.Q, taller than average, violent behaviour, criminal tendency, behavioral problems such as attention deficit disorder, hyperactivity, aggressiveness.	No treatment
most common autosomal abnormality is Down syndrome (Trisomy 21)

-Genotype: XYY
Sex: male
Syndrome: XYY syndrome
Physical Traits: normal male traits

-Genotype: XXX
Sex: female
Syndrome: Trisomy X
Physical Traits: tall stature, learning disabilities, limited fertility

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)05201-6/abstract
Risk of trisomy 21 in offspring of patients with Klinefelter's syndrome
Summary: Intracytoplasmic sperm injection (ICSI) has given some patients with Klinefelter's syndrome (ie, men with an XXY sex-chromosome profile) the chance to become fathers, but the genetic makeup of the spermatozoa used for the injection is a concern. We studied the segregation of the sex chromosomes and chromosomes 1 and 21 by multicolour fluorescence in-situ hybridisation in a patient with non-mosaic Klinefelter's syndrome who was a candidate for ICSI. As other workers have found, we saw a higher rate of 24,XX and 24,XY spermatozoa in the patient than in controls. However, we also found a much higher frequency of disomy 21 in the spermatozoa of this patient than in controls (62 vs 04%). Any child conceived by ICSI using this man's sperm will thus have a proportionally higher risk of trisomy 21.

https://www.medicalnewstoday.com/releases/128761.php
Sperm found in testes of men with Klinefelter syndrome have only a slightly increased frequency of sex chromosome polysomies, and most boys born from fathers with Klinefelter syndrome have a normal karyotype. These findings indicate that during early stem-cell proliferation or meiotic division, the checkpoint mechanisms are able to overcome X chromosome polysomy resulting in sperm with a single X (or Y) chromosome. We now have 3 boys when sperm was found in ejaculate early in puberty and subsequently lost, supporting that the damage to the testis occurs early during puberty. 
Disomy: The condition of having a chromosome represented twice in a chromosomal complement.

Autosomal disorders, most common - incidence/1000 births
	dominant otosclerosis dominant - 3
	familial hypercholesterolaemia dominant - 2
	adult polycystic kidney disease dominant - 1
	cystic fibrosis recessive - 0.5
	recessive mental ******ation recessive - 0.5
	multiple exostoses dominant - 0.5
	Huntington's disease dominant - 0.5
	neurofibromatosis dominant - 0.4

Mosaic or mosaicism: The presence of two or more cell lines. Mosaicism in a man with Klinefelter syndrome may consist of a cell line with a 47,XXY karyotype and another one with a normal number of chromosomes (46,XY). Should non-mosaic Klinefelter syndrome men be labelled as infertile in 2009?
Fullerton G, Hamilton M, Maheshwari A.
Source: Aberdeen Fertility Centre, Aberdeen Maternity Hospital, Aberdeen AB25 2ZN, UK. [email protected]
Abstract
BACKGROUND: Klinefelter syndrome is a common genetic condition. Affected non-mosaic men are azoospermic and have been labelled as infertile. Despite reports that these men can have children using assisted reproduction techniques, it is not common practice in the UK to offer sperm retrieval to these men.
METHODS: Medline and EMBASE (1980-2009) were searched independently by two authors and all studies involving surgical sperm retrieval in non-mosaic Klinefelter syndrome were included. The primary outcome was success of surgical sperm retrieval and the secondary outcome was live birth rate.
RESULTS: The overall success rate for sperm retrieval was 44%, with a higher rate of success using micro-dissection testicular sperm aspiration (micro-TESE) (55%). This, along with ICSI, has led to the birth of 101 children. However, there are no known predictors for successful sperm retrieval. Although there are concerns about genetic risk to the offspring of non-mosaic Klinefelter patients, this risk has not been found to be greater than that of patients with non-obstructive azoospermia with normal karyotype.

CONCLUSIONS: It is possible for a man with non-mosaic Klinefelter to father a child. However, before these techniques are offered, some ethical issues need to be explored.
------------
Physical development
As babies, many XXY males have weak muscles and reduced strength. They may sit up, crawl, and walk later than other infants. After about age four, XXY males tend to be taller and may have less muscle control and coordination than other boys their age. 

As XXY males enter puberty, they often don't make as much testosterone as other boys. This can lead to a taller, less muscular body, less facial and body hair, and broader hips than other boys. As teens, XXY males may have larger breasts, weaker bones, and a lower energy level than other boys. 
By adulthood, XXY males look similar to males without the condition, although they are often taller. They are also more likely than other men to have certain health problems, such as autoimmune disorders, breast cancer, vein diseases, osteoporosis, and tooth decay. 
XXY males can have normal sex lives, but they usually make little or no sperm. Between 95 percent and 99 percent of XXY males are infertile because their bodies don't make a lot of sperm. 

Language development
As boys, between 25 percent and 85 percent of XXY males have some kind of language problem, such as learning to talk late, trouble using language to express thoughts and needs, problems reading, and trouble processing what they hear. 
As adults, XXY males may have a harder time doing work that involves reading and writing, but most hold jobs and have successful careers. 

Social development
As babies, XXY males tend to be quiet and undemanding. As they get older, they are usually quieter, less self-confident, less active, and more helpful and obedient than other boys. 

As teens, XXY males tend to be quiet and shy. They may struggle in school and sports, meaning they may have more trouble "fitting in" with other kids. 
However, as adults, XXY males live lives similar to men without the condition; they have friends, families, and normal social relationships. 

Hypogonadism associated with 47,XXY can lead to a host of comorbid conditions. None appear at alarmingly high rates, but some are three to five times more prevalent among XXYs that among XY men. Among the more common medical complications are osteoporosis, a thinning of the bones making fractures more likely, and autoimmune disorders such as rheumatoid arthritis, lupus, and Type 1 diabetes. XXYs, particularly those who have not had testosterone supplementation, may suffer from venous ulcers. Thyroid disorders are also more common than usual. XXYs are more likely to suffer from seizures. Mood disorders, including depression and bipolar disorder, appear to be much more common among XXY individuals than in the population as a whole, although this has not yet been studied rigorously enough to quantify.
Studies are underway to determine the impact of testosterone therapy on reducing the risks of these complications.





silverbell said:


> That's disgusting, clarkea - about the huge wait and also about being told you'd only have a girl. How wrong can you get? As far as I understand it, if your DH is producing sperm then he'll be producing some sperm with that extra 'x' chromosome and some that are normal. If a particular sperm with an extra 'x' chromosome happens to be female then it'll create an XXX female (the female equivalent of KS - called Triple X Syndrome). It's not like only sperm with extra 'x' chromosomes will create boys - how daft is that doctor?!
> 
> I'm so glad you're getting things transferred. The funding process takes ages and I'm glad you're on the ball and keeping an eye on things - make sure you keep checking. You'll know by now that the NHS runs at a snail's pace and you need to keep making sure they're doing what they should be!


----------



## silverbell

Hoping, I have to say I doubt your husband has KS just because of the fact that he has a sperm count. KS men very, very, very rarely have any sperm in their ejaculation and only about 5% make any in the testicles. A low Testosterone and high FSH does not mean KS and simply means that the body is having issues producing sperm - which is clearly the case.

Don't believe everything you read on the internet. KS can be passed on, as it means there's one extra gene. We were told that the likelihood is that if DH had any sperm then half of it would be normal (46 chromosomes) and half would have the extra chromsome.

It's not true about them only being able to conceive boys either.

There's absolutely no evidence at all that men with KS can pass on Down's syndrome etc. The extra gene they have is in a different place.

My husband didn't tick every box for KS but he still has it.

You really need to wait on the results before jumping the gun, but just from what you've said I have to say I'd be very surprised if he has KS.

---

Merry Christmas to you all x


----------



## Hoping4our1st

Hi Siverbell, thank you for taking the time to write and for your thoughts. i just have a feeling he does have it based on some major symptoms (less than 1 mil. sperm, smaller than average testicles per the urologist, 6'3.5", has a moderate to severe learning disability, has low free testosterone, high FSH.)

i will try to relax and wait and see, afterall i am not a doctor of course.

we were in London for our honeymoon and boy did we love it, it is my husband's favourite.

best of luck with your donor sperm. someone in my family adopted a baby and from my perspective i never thought anything other than that this beautiful child is theirs 1000%. i would do donor sperm also, i am sure it is a wonderful miracle and experience. i'm still feeling really down so i'll blame that on whether or not this email makes the best sense. i wish you the very best with your BFP!! Merry Christmas and Happy New Year to you and all.
:flower:


silverbell said:


> Hoping, I have to say I doubt your husband has KS just because of the fact that he has a sperm count. KS men very, very, very rarely have any sperm in their ejaculation and only about 5% make any in the testicles. A low Testosterone and high FSH does not mean KS and simply means that the body is having issues producing sperm - which is clearly the case.
> 
> Don't believe everything you read on the internet. KS can be passed on, as it means there's one extra gene. We were told that the likelihood is that if DH had any sperm then half of it would be normal (46 chromosomes) and half would have the extra chromsome.
> 
> It's not true about them only being able to conceive boys either.
> 
> There's absolutely no evidence at all that men with KS can pass on Down's syndrome etc. The extra gene they have is in a different place.
> 
> My husband didn't tick every box for KS but he still has it.
> 
> You really need to wait on the results before jumping the gun, but just from what you've said I have to say I'd be very surprised if he has KS.
> 
> ---
> 
> Merry Christmas to you all x


----------



## Stardust1

Like Silverbell said my husband didn't tick all of the Klinefelters boxes either, he has an amazing libido, is very masculine doesn't have enlarged breast tissue, but he sure as heck has that piece of paper stating 47XXY. I wouldnt jump to conclusions till you get the results. I was told that very rarely, men with klinefelters, can produce a small amount of sperm during puberty, I suppose when hormone levels are at their best, but this will peter off as they go beyond teenage years. 
Try not to worry too much, if there has been sperm before you never know, and even if it does come down to donor sperm like it did for us, my Husband is already in love with our baby despite whatever a DNA would say and despite everything and all the heartache we went through to get this baby I would go through it all again for this little one :cloud9:
Wishing you all the best.:flower:


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## theclarks8687

I'm so happy to see your pregnancy is going well star, make sure you keep us updated!


And to everyone else Happy Holidays!


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## clarkea

Hi all, sorry not been on for a while. Well my dh had the sperm retrieval and they found some!!!!!! They went in one side of the testicle and took out 8 strands. The week after we went for the post op and was told they have got 7 out of the 8. 
This is as u can imagine really really fantastic news for us and hope for others in this situation. 
We were in total shock when he said he'd found some as we were only given a 5% chance of finding some. 
We are now just waiting for an app for an open evening and then we go ahead with the ivf. 
I hope u re all well xx


----------



## clarkea

Hoping4our1st said:


> Hi, it sounds like a long journey so far. can you please explain more about what you've written that if he is 47xxy he cannot have a boy only a girl? did you find out if he is mosaic Klinefelter's? i think my husband is that based on his smaller than average testicles per the urologist, my husband is 6'3.5", has a moderate to severe learning disability, has low free testosterone, high FSH. he is a hairy guy with no libido problems but i'm pretty sure he has this diagnosis, we get his karyotype/chromosome test results in feb.
> 
> 
> 
> clarkea said:
> 
> 
> Heres my story so far, if i can remember its been that long!
> 
> I have been ttc with my DH for 7 years. I went for test after about 1 year as nothing was happening. My tests came back clear so decided to just carry on trying. My doctor told me we wernt trying hard enough! Can you believe that lol
> After 5 years with still no luck (we left it this long as it took my sister so long to concieve i thought it was me!) we went back to the hospital to see what we could do. They advised to get DH tested. Sperm test came back with zero sperm! Doctor asked he the test was done right! how can you possibly do it wrong!
> Did another test. doctor said it was lost in transit! worrying! Did another test was told to again zero sperm. He wasnt very nice about it either!
> Referred to St Marys Manchester, did a load of tests! each with months apart. Taking too long!
> Looked up last night and was diagnosed in Feb 2011.
> Was told that we need sperm retrieval, PGD and IVF. but that it all needed to be done in London at Thomas and St Guys as they dont do PGD anywhere else.
> Was told to quit smoking and go back in 2 months. so we did and went back, doc said they will put us on the list for sperm retrieval. Once we had this done at Mancehster we would go straight to LOndon for OGD and IVF. They also said that we would never concieve a boy as he would def have xxy. We got told only a girl.
> 
> Went to an endocrinology app in Oct 11 who looked at my DH and said are you sure they confirmed xxy as he looks so normal (good muscle build) testorone level normal etc...
> They said he might by mosaic (some xxy and some xy), and that even if his tests came back that he was 47 xxy he probably wouldnt be as they only test a certain part of your blood/sperm. There was no way of them checking all parts so that why if they dont see any normal xy in one smple then they just call you 47 xxy.
> 
> Then received a letter to say that he wasnt mosaic on paper but could still possibly be!
> How messed up is that (gave us hope though)
> 
> Went to a Genetic councelling app in Jan this year who didnt help one tiny bit! He said he hadnt had to deal with this before and wasnt very clued up on xxy.
> He did say though that it is possible for us to have a boy if they get sperm. It was 50/50. that was good news for us as the thought of not having a boy was not nice. Although i would be very happy with a girl. :)
> 
> He said that the process was taking too long and that he would find out where we were up to and let us know!
> 
> Two weeks after app and not hearing anything at all from anyone i phoned up Manchester hospital to see if we were near the top of the list as we were told 1 year waiting list.
> They said we were no 40 and they only do 2 a month as the doctor has other commitments! It would prob be next year now!
> 
> This obviously wasnt acceptable as i was ready to become a mum 7 years ago! the thought of waiting another year i couldnt cope with so i phoned Liverpool womens hospital to see how long their waiting list was.
> They said no waiting list so i phoned Manchester to see if we could get transferred.
> They said it would take 1 - 2 weeks to do this.
> I phoned 1 week later to make sure everything was going smoothly and they said they hadnt done anything as they need to apply to their funding dept! Its not funded by my PCT its funded by theirs.
> They said they would do it that day but the big guys only have a meeting once a month so not sure how long it would take.
> 
> We are now just waiting to be transferred over so we can start the ball rolling.
> 
> Sorry this is quite long, i have a lot to tell lolClick to expand...




Hi Hoping for our 1st. Reading what u have said and due to the fact that ur husband has a sperm count at all sounds like he doesn't have klienfelters. Although I can only tell u wat I have been told a person with klienfelters has zero sperm count. 
My past posts are wat docs have previously said but in my experience every doc tells. Different thing due to the fact no one really has a clue about it. 
One time I went to a doc n ended up telling him things bout it

Or results seem to take a while can u not ask them to speed things up

Please ask me anything u feel u want to know and I will try and help in n e way I can. I know how all this feels n the worst part is devo not knowing
X


----------



## Hoping4our1st

Clarkea, wow, congrats on finding sperm and very best of luck with your IVF. thank you for taking the time to reply to my post, i did read it over Christmas. it was nice to take a break from all this sadness.:flower:


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## theclarks8687

clarkea said:


> Hi all, sorry not been on for a while. Well my dh had the sperm retrieval and they found some!!!!!! They went in one side of the testicle and took out 8 strands. The week after we went for the post op and was told they have got 7 out of the 8.
> This is as u can imagine really really fantastic news for us and hope for others in this situation.
> We were in total shock when he said he'd found some as we were only given a 5% chance of finding some.
> We are now just waiting for an app for an open evening and then we go ahead with the ivf.
> I hope u re all well xx

That is fantastic!


----------



## Username one

Hi every one. My story goes as follows. 
Dh,29- klinefelters syndrome
Me, 23 so far so good

Dh had TESA today and could not believe it when they found sperm. Obviously the Clomid that he's been on worked. Thank heavens as the side effects were horrendous.

Now waiting a few weeks for my next period to come and go so i can have a scan to check if im all ok.

Then we start our first cycle of ivf.i will have to have the injections and everything( omg hope they arent too bad) and dh will have snother TESA to get fredh dperm when i have my egg collection.

Im so happy that as long as there is still sperm there on 2nd TESA we should be able to have a biological child. At the same time im starting to get scared of the injections and procedure ahead as i am a big chicken. Please tell me theyre not too bad. Lol


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## maybeBmommy

Username one said:


> Hi every one. My story goes as follows.
> Dh,29- klinefelters syndrome
> Me, 23 so far so good
> 
> Dh had TESA today and could not believe it when they found sperm. Obviously the Clomid that he's been on worked. Thank heavens as the side effects were horrendous.
> 
> Now waiting a few weeks for my next period to come and go so i can have a scan to check if im all ok.
> 
> Then we start our first cycle of ivf.i will have to have the injections and everything( omg hope they arent too bad) and dh will have snother TESA to get fredh dperm when i have my egg collection.
> 
> Im so happy that as long as there is still sperm there on 2nd TESA we should be able to have a biological child. At the same time im starting to get scared of the injections and procedure ahead as i am a big chicken. Please tell me theyre not too bad. Lol


That's so exciting for you! Do you mind me asking, how long after his diagnosis were you able to have the first TESE?


----------



## Username one

Hi maybebmummy, we were diagnosed in november 2012 and had first tese 
30th january


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## maybeBmommy

My hubby hasn't officially been diagnosed yet but after researching I think this is what he has. He is absolutely hating the idea of DS and I don't think he'll do it, and I am absolutely hating the idea of never being pregnant....don't know what we'll do.

My husband is very tall (6'5") small testicals, can't grow facial hair, sleep apnea, low sex drive......all things point to KS....we still have to wait until the end of next month to see a urologist. I'm just broken.


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## clarkea

Username one said:


> Hi every one. My story goes as follows.
> Dh,29- klinefelters syndrome
> Me, 23 so far so good
> 
> Dh had TESA today and could not believe it when they found sperm. Obviously the Clomid that he's been on worked. Thank heavens as the side effects were horrendous.
> 
> Now waiting a few weeks for my next period to come and go so i can have a scan to check if im all ok.
> 
> Then we start our first cycle of ivf.i will have to have the injections and everything( omg hope they arent too bad) and dh will have snother TESA to get fredh dperm when i have my egg collection.
> 
> Im so happy that as long as there is still sperm there on 2nd TESA we should be able to have a biological child. At the same time im starting to get scared of the injections and procedure ahead as i am a big chicken. Please tell me theyre not too bad. Lol

Hi

Why does he need tesa again? How much did they find originly and sre u nhs or private


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## Andromeda1

My husband also has klinefelter, I would like to ask how did you go about the sperm donor treatment?


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## Andromeda1

What is tesa and the clomid? my husband has klinefelter


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## clarkea

Tesa is sperm retrieval. When you have xxy there is a chance sperm is there but not coming out. We were given a 5% chance they wud find sum. Then a 40% chance and luckily for us they found some. They have now frozen it so when we do IVF we can hopefully have our biological baby x


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## Stardust1

Hi guys I hope everyone is well, just a quick note from me to say I successfully gave birth to a beautiful baby boy on Friday 15th march. My DH and I are absolutely thrilled with him and if you didn't know we'd had to use a donor due to KS you would never ever realise DH is not the biological father. He is amazing with him and it makes me so proud. 
Good luck to all of you and congrats clarkea on them finding sperm x


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## clarkea

Wow congratulations. So so thrilled for you both, now the work begins hey lol. Well done u both deserve this happiness now. X


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## theclarks8687

Congrats hun, he is georgous


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## Teach2

Hi I think DH has klinefelter's syndrome. We have been TTC for a yr with no luck, DH is convinced it's him. He said yesterday that he has small testicles, I have never noticed this but he played a lot of sport in his youth and said he noticed in the changing rooms over the years. 

I have been googling this and have come across the syndrome. He fits lots of the symptoms: Breast tissue, low sex drive, dyslexic, low muscle mass (he is always complaining that he can't get big enough biceps etc), impatient etc (I thought he was mildly autistic but maybe it's KS) He feels awful with just his assumptions so I said we should get an SA as he could be worrying about nothing (this was before my googling)

I don't know how to broach the idea that this could be the issue without making him feel worse. Any ideas? Should we just go for an SA and see or should I tell him what I'm thinking? I'm convinced that he has it and don't want to mess around TTC alone if we need help.


----------



## LouisaAce

Teach2 said:


> Hi I think DH has klinefelter's syndrome. We have been TTC for a yr with no luck, DH is convinced it's him. He said yesterday that he has small testicles, I have never noticed this but he played a lot of sport in his youth and said he noticed in the changing rooms over the years.
> 
> I have been googling this and have come across the syndrome. He fits lots of the symptoms: Breast tissue, low sex drive, dyslexic, low muscle mass (he is always complaining that he can't get big enough biceps etc), impatient etc (I thought he was mildly autistic but maybe it's KS) He feels awful with just his assumptions so I said we should get an SA as he could be worrying about nothing (this was before my googling)
> 
> I don't know how to broach the idea that this could be the issue without making him feel worse. Any ideas? Should we just go for an SA and see or should I tell him what I'm thinking? I'm convinced that he has it and don't want to mess around TTC alone if we need help.


Teach2 hope you have found a way to speak to your DH, better seek help sooner rather than later as time seems to drag when you've been trying for awhile.

We have been TTC for almost three years, I always had an idea conceiving would be a problem so it wasn't a shock that it didn't happen. The Kleinfelters diagnosis was a shock though, more so for my husband and mother in law, and it was (and still is) a really emotional time.
They found some sperm, and fortunately my brother in law is going to be a donor if all else fails, so we can go ahead with ivf.

The struggle for me now is waiting to get started as we have to go through counselling, dealing with my mother in laws CONSTANT questions (she doesn't get that it's hard to talk about and that we don't want everyone to know), and finding out that my younger sister is pregnant with twins and it seems selfish but I feel like I should've been first.
While I'm grateful that ivf is available, I feel a bit robbed; that we can't have a baby the 'normal' way, and that the stereotypical surprise of a positive pregnancy test isn't going to happen.

I've spoken to a friend that had ivf for different reasons, but it feels good to bent to people that understand Klinefelters. How do others deal with parents, siblings etc...


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## Teach2

Thanks I haven't managed to speak to him because he said he was going to have an SA. I figured we'd see what happened but he has done nothing about it. He is convinced he has a problem but at the same time wants to make a massive effort when I'm fertile. I feel like it's prob a waste of time but at the same time can't give up. I said during the summer holidays I will go and get the tests done that I need so he will hopefully do the same then if not before.

I'm sorry that you are having such a hard time. The only thing that I find helps is by focusing on the positives which is not easy but like you said we are lucky to have any options at all, many women in other countries don't. If I tell myself this enough eventually I feel a little better for a while!


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## clarkea

Stardust1 said:


> Hi guys I hope everyone is well, just a quick note from me to say I successfully gave birth to a beautiful baby boy on Friday 15th march. My DH and I are absolutely thrilled with him and if you didn't know we'd had to use a donor due to KS you would never ever realise DH is not the biological father. He is amazing with him and it makes me so proud.
> Good luck to all of you and congrats clarkea on them finding sperm x




Teach2 said:


> Thanks I haven't managed to speak to him because he said he was going to have an SA. I figured we'd see what happened but he has done nothing about it. He is convinced he has a problem but at the same time wants to make a massive effort when I'm fertile. I feel like it's prob a waste of time but at the same time can't give up. I said during the summer holidays I will go and get the tests done that I need so he will hopefully do the same then if not before.
> 
> I'm sorry that you are having such a hard time. The only thing that I find helps is by focusing on the positives which is not easy but like you said we are lucky to have any options at all, many women in other countries don't. If I tell myself this enough eventually I feel a little better for a while!

Hi there.

Probably best for your dh to go to his doctors. Klienfelters can be confirmed with a blood test. My dh and i put him getting tests off for about 7 years. If we had got the tests done earlier we probably would have had children by now. 

Its very hard for a man to go doctors spesh when its something like this but alls i can say to u is dont wait! Get tested sooner rather then later.


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## DarnNiceGuy

Saw this forum... and had to post...
I am almost 34 years old and on Friday, just 3 days ago, I learned - from a genetic test (due to infertility) - I had KS. Although I'm still reeling from the discovery, I was somewhat prepared for the bad news. Since Nov of 2012, I've been scoring low, if not "lower than 1 m/ml" on sperm analysis tests. From those previous tests, I learned to cope. But this is a little much...



On a side note, how is it that ... all my 'strange' quirks in life, added up together... equals a scientific identified syndrome?


----------



## clarkea

DarnNiceGuy said:


> Saw this forum... and had to post...
> I am almost 34 years old and on Friday, just 3 days ago, I learned - from a genetic test (due to infertility) - I had KS. Although I'm still reeling from the discovery, I was somewhat prepared for the bad news. Since Nov of 2012, I've been scoring low, if not "lower than 1 m/ml" on sperm analysis tests. From those previous tests, I learned to cope. But this is a little much...
> 
> 
> 
> On a side note, how is it that ... all my 'strange' quirks in life, added up together... equals a scientific identified syndrome?

Hi there.

If you actually have a sperm count, no matter how low and have been confirmed as KS. Then this would mean you are mosaic. This means you have some normal xy aswell as xxy. Im no doctor but if you have got ks, the best outcome would be to have mosaic ks. 

Have you any previous children?


----------



## theclarks8687

DarnNiceGuy said:


> Saw this forum... and had to post...
> I am almost 34 years old and on Friday, just 3 days ago, I learned - from a genetic test (due to infertility) - I had KS. Although I'm still reeling from the discovery, I was somewhat prepared for the bad news. Since Nov of 2012, I've been scoring low, if not "lower than 1 m/ml" on sperm analysis tests. From those previous tests, I learned to cope. But this is a little much...
> 
> 
> 
> On a side note, how is it that ... all my 'strange' quirks in life, added up together... equals a scientific identified syndrome?

When we found out about my husband, he was 25 yrs old. When we read up on it and all the symptoms of KS, it clicked well into making a lot of sense as to why he was the way he was on some things. It odd how you can go years being slightly different and never knowing why and then it all makes sense one day. And as the previous poster posted you probably have the milder KS. And are extremely lucky to be producing and "dispensing" sperm.


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## silverbell

DarnNiceGuy said:


> Saw this forum... and had to post...
> I am almost 34 years old and on Friday, just 3 days ago, I learned - from a genetic test (due to infertility) - I had KS. Although I'm still reeling from the discovery, I was somewhat prepared for the bad news. Since Nov of 2012, I've been scoring low, if not "lower than 1 m/ml" on sperm analysis tests. From those previous tests, I learned to cope. But this is a little much...
> 
> On a side note, how is it that ... all my 'strange' quirks in life, added up together... equals a scientific identified syndrome?

DarnNiceGuy - I'm so sorry about your diagnosis, but I agree with the other posters that if you've got a count on sperm analysis - no matter how low - then it seems you should have the milder form of KS and IVF (I imagine with ICSI) should certainly be possible. My husband didn't have any sperm on SA and had a biopsy of his testicles, which showed he didn't even produce it and never had, so we're having to use donor sperm. Wishing you all the best with your journey and please feel free to post on here to get support - you're certainly in the place where we can all understand what you're going through, even if mostly from the female perspective.

---

Hey everybody. How are you all doing? Sorry it's been so very long since I've been around. I've found things so tough, particularly lately.

After 6 failed medicated DIUIs and 1 failed DIVF, we are now in the midst of our 2nd and last DIVF. 

If this doesn't work, it's the end of the line for us. We'll be going down the adoption route. We can't bear any more heartache, financial loss and stress of it all. 

The realisation that we're so close to 'the end' now scares me, but I know it's the right choice for us. I feel like we can't keep throwing money at this and 'flogging a dead horse' as they say. If 6 DIUI and 2 DIVFs don't work then it's pretty likely any further IVFs won't work either.

Egg collection and transfer are due to happen early next week, all being well.

Think of you all often and so glad to see some happy news on here (huge congrats, Stardust on your baby boy and to clarkea for finding sperm :spermy:).


----------



## theclarks8687

Hey hun so glad to see you back. I pray this cycle works for you.


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## silverbell

It's over before it began, unfortunately.

I had my EC yesterday and was told I had 1 egg collected - the other follicles were "empty".

Today I was told it didn't fertilise (despite ICSI).

I'm devastated. We can't afford another try :cry:


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## theclarks8687

Aoh no hunny I am so sorry. I wish I had the right words.


----------



## clarkea

So sorry silverbell :( x


----------



## silverbell

Thanks both.

Well after some discussions, DH and I have said we need to have 1 last try because we never got our last chance. However, as difficult as it has been to decide ... we won't be using my eggs. We wouldn't feel confident with them any more and we'd rather have an excellent chance from eggs we know are top quality rather than pure guesswork and most probably more heartache by using my own.

So we are now looking into donor embryo donation/adoption abroad (UK lists are very long and expensive and the clinics that offer it few and far between). We shall have to get into some debt over this, but we shall pay it off as soon as possible and quickly and we feel we must give this a try.

Although it was nerve-wracking to begin with and a bit scary, I've done quite a bit of research in the past week since EC and have learned a lot and we really do feel it's our best option. Due to the costs abroad we may even get to have 2 chances, which would be fab. 

We feel like we're starting from scratch again, which is good in a way because some of the old excitement and hope has started to return (I completely lost this after last December's failure and didn't have any hope or excitement at all this 2nd IVF try). I'm really hoping this will be the answer for us. We're hoping to go for it in October, all being well. Just got to narrow our choices down and do a bit more research.

If this doesn't work then we'll start the long road towards adoption, but we feel like we have to give donor embryo a chance first.


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## clarkea

i wish you all the luck in the world x


----------



## MadCatLady

Hi Ladies, I have been on the azoospermia forum up till now but we found out recently that DH has KS so I was pleased to see there is a thread here for this too! I have been entirely confused by everything I have read elsewhere on the internet and what we were told at an appointment yesterday so wondering if any of you can possibly guide me! Are there any specialists in the UK for KS? Just wondering if there is anyone with really up to date knowledge/actual interest in this field rather than FS who just know about it?!

I had a sneaking suspicion that DH bloodwork might come back with KS after finding out he was azoospermic as he had a few, though by far not all, of the markers, so I have been doing some reading around this subject while waiting for results to come back. So many research papers, esp from the last 4 years, give odds of finding sperm through mTESE between 20-70% - though most quote about 40-50% chance. Granted most of these are based on American research but are we so far behind in the UK? The Dr we saw yesterday gave DH odds of less than 1% of finding anything and to move straight to DS. DH is heartbroken, he just wanted the chance to find out if there was really nothing there as he's read similar stuff to me. I just really, really want to make sure that all this research that is out there isn't true! Because it is so at odds with what we were told yesterday.

I also read that if you have high FSH with KS then that means definitely no chance of sperm in testes, however there are other research papers that contradict this too! 

Basically, what odds were you given of finding anything through TESE/mTESE? Does anyone know of any specialists in the UK? Looking through the forum it looks like some of you were given option of mTESE etc and not told to move straight to donor - do you know the reason why? Does anyone have any experience of high FSH and finding sperm?

Sorry for the many questions, I haven't slept at all with all this running round my head so it's all just blleeuurrgghhing onto the page!!


----------



## silverbell

MadCatLady said:


> Hi Ladies, I have been on the azoospermia forum up till now but we found out recently that DH has KS so I was pleased to see there is a thread here for this too! I have been entirely confused by everything I have read elsewhere on the internet and what we were told at an appointment yesterday so wondering if any of you can possibly guide me! Are there any specialists in the UK for KS? Just wondering if there is anyone with really up to date knowledge/actual interest in this field rather than FS who just know about it?!
> 
> I had a sneaking suspicion that DH bloodwork might come back with KS after finding out he was azoospermic as he had a few, though by far not all, of the markers, so I have been doing some reading around this subject while waiting for results to come back. So many research papers, esp from the last 4 years, give odds of finding sperm through mTESE between 20-70% - though most quote about 40-50% chance. Granted most of these are based on American research but are we so far behind in the UK? The Dr we saw yesterday gave DH odds of less than 1% of finding anything and to move straight to DS. DH is heartbroken, he just wanted the chance to find out if there was really nothing there as he's read similar stuff to me. I just really, really want to make sure that all this research that is out there isn't true! Because it is so at odds with what we were told yesterday.
> 
> I also read that if you have high FSH with KS then that means definitely no chance of sperm in testes, however there are other research papers that contradict this too!
> 
> Basically, what odds were you given of finding anything through TESE/mTESE? Does anyone know of any specialists in the UK? Looking through the forum it looks like some of you were given option of mTESE etc and not told to move straight to donor - do you know the reason why? Does anyone have any experience of high FSH and finding sperm?
> 
> Sorry for the many questions, I haven't slept at all with all this running round my head so it's all just blleeuurrgghhing onto the page!!

Hi MadCat. Glad you've found us, but I'm sorry about the diagnosis.

I saw Mr Ramsay in London who is a very highly respected Urologist who has an interest in infertility in men and has operated on men with KS (I believe he's the only surgeon in the UK who will do mTESE). 

When we saw him in 2011 he said that on the 20 men he had operated upon with KS, only 3 had sperm on mTESE. This meant he gave us a 5% chance of finding useable sperm. Unfortunately there was no sperm found on mTESE for us.

I did initially feel that the odds looked pretty good on the internet, but I'm afraid I think they're not very accurate. I wonder if it's because mTESE itself is still a fairly new investigative surgery. We personally just felt like we had to do it so we knew for sure before heading down the donor path.

Mr Ramsay told us that there was always, always, always a chance and if we wanted to try then he definitely wasn't going to stop us. We were told by another Urologist that we shouldn't bother as it was going to be a bad result, but we trusted Mr Ramsay and felt he wouldn't put us through an operation if he felt this was the case. Unfortunately some Urologists are just clueless.

I hope this helps in some way. It was definitely worth it for us to go and see Mr Ramsay as we felt he was the first person in the medical field we'd come across who understood azoospermia and KS and could talk to us on our level about it. Before him we found we actually knew more than the medical "experts" on the matters.

EDIT - I forgot to say: We were told by Mr Ramsay that blood results truly didn't tell him an awful lot because he'd found sperm in men with high FSH and sperm in men with normal FSH. He did say that all a high FSH shows really is that the body has recognised there is a problem and is trying to rectify it and is an encouraging sign but doesn't mean sperm are being produced. The only way to tell for sure if sperm are being produced is for a biopsy of the testicle (mTESE being the best for this). My DH had a high-ish FSH (wasn't normal but wasn't ridiculously high).

I'm really sorry you find yourself here and I hope your DH is coping with this news as well as can be. If you have any questions I would be happy to help and I know the other ladies here will be happy to help as well.


----------



## clarkea

MadCatLady said:


> Hi Ladies, I have been on the azoospermia forum up till now but we found out recently that DH has KS so I was pleased to see there is a thread here for this too! I have been entirely confused by everything I have read elsewhere on the internet and what we were told at an appointment yesterday so wondering if any of you can possibly guide me! Are there any specialists in the UK for KS? Just wondering if there is anyone with really up to date knowledge/actual interest in this field rather than FS who just know about it?!
> 
> I had a sneaking suspicion that DH bloodwork might come back with KS after finding out he was azoospermic as he had a few, though by far not all, of the markers, so I have been doing some reading around this subject while waiting for results to come back. So many research papers, esp from the last 4 years, give odds of finding sperm through mTESE between 20-70% - though most quote about 40-50% chance. Granted most of these are based on American research but are we so far behind in the UK? The Dr we saw yesterday gave DH odds of less than 1% of finding anything and to move straight to DS. DH is heartbroken, he just wanted the chance to find out if there was really nothing there as he's read similar stuff to me. I just really, really want to make sure that all this research that is out there isn't true! Because it is so at odds with what we were told yesterday.
> 
> I also read that if you have high FSH with KS then that means definitely no chance of sperm in testes, however there are other research papers that contradict this too!
> 
> Basically, what odds were you given of finding anything through TESE/mTESE? Does anyone know of any specialists in the UK? Looking through the forum it looks like some of you were given option of mTESE etc and not told to move straight to donor - do you know the reason why? Does anyone have any experience of high FSH and finding sperm?
> 
> Sorry for the many questions, I haven't slept at all with all this running round my head so it's all just blleeuurrgghhing onto the page!!

Hi There.

im sorry for your diagnosis but please dont give up hope. They found sperm in my DH, froze it and we are now in the middle of doing our stimming injections for ICSI/IVF. 
Ask anything you like.. anything x


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## MadCatLady

Hi, thank you both for your replies! Clarkea - can I ask where your DH had his testicular biopsy? Was it also only in London? Silverbell, I've now emailed Mr Ramsay as I think DH would want to try and exhaust all possibilities with him first and if he is the one to do mTESE then think we need to go and at least chat. 

I emailed Mr Schlegel in New York and he was very helpful in terms of why his success rates in finding sperm was so much better than the UK, however he then told me it would be $45,000 to go for the surgery and timed IVF etc which is somewhat outside of what we can afford. Just waiting to see hear from Mr Ramsay now and after that I don't know. 

Really useful to hear from you, and I'm glad I found this forum :)


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## silverbell

Good grief that's a ridiculous amount of money, especially with no certainties. Blimey. 

From what I remember Mr Ramsay said Dr S has the very best equipment in the US with incredible microscopes. I remember he was very envious. But we knew Mr R was the best in the UK and that was enough for us. 

I'm glad we've been helpful and don't hesitate to ask any other questions.


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## clarkea

Biopsy was done at Liverpool womens hospital by Dr Lewis Jones. X


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## LouisaAce

I had to go to a baby shower today (ALOT of babies, toddlers etc...), with my younger sister who is expecting twins. All the talk of babies (especially my sisters), proved to be a little too much by the end.

We are still roughly 3-4 months away from starting IVF with donor sperm. At first I was excited about it, recently I'm getting terrified about all the things that could go wrong, especially as I don't know how we'd afford another round if it doesn't work first time.

So I guess I just needed to vent somewhere where people understand. Advice/ coping strategies greatly appreciated!


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## silverbell

clarkea - sorry to read in your signature about the OHSS and that you have to wait 3 months, but that's a great number of fertilised embies waiting for you and at least you'll be fully fit and ready when they're transferred. I hope you're feeling a bit better with regards to the OHSS now.

Louisa - I think that would be too much for any of us here and indeed for most people dealing with infertility.

The only coping strategy I can think of with regards to the 3-4 months' wait is to fill it by doing things that you love and really just enjoy your time as a couple. It's so easy to put everything on the back burner when you're dealing with infertility and for it to consume you. Although you won't go a day without thinking about it, you can at least have some fab fun-filled days doing some great things with the man you love. Not only does it make the time go quicker, but it brings you even closer together at the time when it is more important than ever.

With regards to talk of babies etc, I'm afraid to say that at the beginning of all this I could be around babies fairly reasonably but by now I just avoid them at all costs. I've turned down invitations and have left rooms when people with babies enter, have avoided talking about babies with colleagues, have temporarily hidden friends with children from my Facebook feed as I was sick of being greeted with lovely, smiling babies every time I logged on. Makes me feel awful and horrible, but it has helped me cope better I think. 

Best of luck to you x

---

Update from me is (to cut a long story short) I'm on the waiting list for an egg donor. We're going to have a fresh egg donor and a fresh sperm donor combined to produce a fresh embryo and have this transferred. Wait will be about 3 to 6 months. So excited to have another bash at trying to conceive, even though it's not the way we ever thought it would be.


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## theclarks8687

I agree, baby events are not good for me to handle, I have a hard time seeing a baby in public let alone being cooped up with one. My nephews first birthday was right after my first miscarriage and I had to walk away because I just started balling because I couldn't handle all the toddlers, infants, and pregnant women there, was nothing against any of them, it was just emotionally too hard, now I just avoid it at all cost, including his second birthday this last June.


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## theclarks8687

That is exciting silver bell, we are considering other options now and honestly I don't even know if ivc would even help at this point because even though it took a yr, I still got pregnant with donor sperm, but I don't even know if it would stick, I'm going to have to set up an appointment soon and try to see if we can start running test and what not.


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## LouisaAce

My younger sister had twins this evening. I feel so immensely guilty for being so sad about it. I don't want to rain on her parade and I'm genuinely happy for her, but I just feel so empty otherwise, especially as we still have no idea when we'll be able to start IVF. An I being super selfish?


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## silverbell

Absolutely not, Louisa.

After almost 3 and a half years of TTC (the last 2 and a half knowing what we were dealing with), I'm afraid I have a range of emotions from jealousy and anger to sadness and hopelessness on a fairly daily basis.

I'm now even jealous of ladies who have TTC for years who have gotten success.

I read about people in magazines who TTC for ages and then 'suddenly' got pregnant and it was a miracle and I have to be honest but I get so angry and envious and want to screw the magazine up lol.

I've hidden all my friends who have babies/children from my FB newsfeed as it was breaking my heart seeing happy families.

Infertility is horrendous to go through but when it's something as severe as Klinefelter's it really does go up another level in my opinion. The injustice is sometimes unbearable.

Thinking of you and don't feel bad about your feelings - you're only human and you're going through a heck of a lot. xx


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## LouisaAce

Thanks Silverbell.
It feels like a conspiracy when TTC, there's pregnant ladies and nappy commercials and happy families EVERYWHERE, but I had to laugh at this one..... (Maybe to keep from crying?!)
The night after she had the twins I went to an adult shop (long story, looking for a tiara for a Halloween costume) and obviously I was still feeling quite down). So I wandered around for awhile and then realised that the lady behind the counter was at least eight months pregnant, and it was just like "seriously universe?" Kick me while I'm down


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## silverbell

Hello ladies.

I hope you are all doing OK.

I'm thrilled beyond words to say that our first fresh donor embryo transfer worked. I got my first ever positive pregnancy test on Wednesday and we are just flabbergasted :cloud9:

I know it's very early days, but just to get pregnant is honestly something we never thought we'd experience and we feel so very grateful and so lucky.

Would also like to say that even though I saw LTTTC ladies get their BFPs I had honestly still convinced myself it would never happen for me ... yet here I am. Keep the faith!

Praying you all get your BFPs soon xxx


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## clarkea

Aww well done silverbell. Many congratulations to u both.
We have had our transfer of our 1 and only embryo and we are due to test on tuesday.
Congratulations again xx


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## silverbell

clarkea said:


> Aww well done silverbell. Many congratulations to u both.
> We have had our transfer of our 1 and only embryo and we are due to test on tuesday.
> Congratulations again xx

clarkea how exciting! I do so hope and pray that your test day on Tuesday brings you your long-awaited :bfp:

:dust: :dust: :dust:

It only takes 1 and clearly that one's a little fighter. 

Good luck and thinking of you xxxx


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## clarkea

Thanks silverbell. Xx


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## clarkea

Bfn :,(
Thinking we might have to do donar sperm. X


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## silverbell

clarkea said:


> Bfn :,(
> Thinking we might have to do donar sperm. X

I am so sorry, clarkea :hugs::hugs::hugs: I had really hoped you'd get your lucky break.

Will you be having a follow-up appointment with your clinic to discuss things? They can discuss donor sperm with you further then.

It certainly sounds as though you have lots of eggs and there's no reason why the quality of them should be questioned, so it may well be that the sperm needs to be of better quality to produce healthier embies and fertilise more eggs. 

It's a very personal decision and of course one that requires much discussion between the 2 of you.

Thinking of you and so sad to hear your news. Look after yourself xxx


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## clarkea

Hi silverbell. 
Donor sperm was always a possible option as u know klienfelters sperm.
We thought because we are wanting/needing a baby as soon as we would try donor sperm. We have had a long long talk and my husband is happy as he diesnt want to try his sperm again for it not to work coz its xxy sperm.
We thought that if we try donor sperm on our nhs 2cycle. When we go for our 3rd (hopefully) go we would pay for another sperm retrieval and have a go again. 
We are so desperate for a family donor sperm sounds like the way to go.
R u living in the uk? Im curios to know how the donor sperm list works??


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## silverbell

clarkea said:


> Hi silverbell.
> Donor sperm was always a possible option as u know klienfelters sperm.
> We thought because we are wanting/needing a baby as soon as we would try donor sperm. We have had a long long talk and my husband is happy as he diesnt want to try his sperm again for it not to work coz its xxy sperm.
> We thought that if we try donor sperm on our nhs 2cycle. When we go for our 3rd (hopefully) go we would pay for another sperm retrieval and have a go again.
> We are so desperate for a family donor sperm sounds like the way to go.
> R u living in the uk? Im curios to know how the donor sperm list works??

I am in the UK, clarkea, and I will PM you now xxx


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## lashea110525

My husband and I have been TTC for 2 years now. I was married before and have a daughter from my first marriage. My husband has no biological children and after being married a year we decided we would try. After a year of having any success my ob told me that since my husband doesn't have any children that she would suggest for him to have a semen analysis done. To make a long story short after 3 semen test all came back with no sperm. My ob and my husbands urologist decided we needed to see fertility specialist. She thought right away it could be a genetic disorder and after doing some blood work we got the sad news he has Klinefelters syndrome. We have options but we are just unsure which to do. 
Option 1. IVF To be able to do that they would have to start me on medication. Then my husband would have to be put to sleep to see if they can find live sperm in his testicles. Our doctor said it would be a very low percentage to find live sperm. So if they don't my husband will have to go through more traumatic news and have the actual scar to prove it. If it does work though we have a high chance that our child would have infertile issues as well. Then to top it off it's around $20 to $30 thousand!!
Option 2. Donor sperm. When I first heard of this I was, not going to lie, mortified. I had this horrible stigma on it. My doctor sat down and explained it to me and honestly I was very much relived. It kinda gave me a glimmer hope. She informed us that they can even match a donor that resembles your partner so the baby will favor him. To me that's just crazy insane, in a good way of course. The cost of that is around $800 which compared to $30,000 is just so much more appealing to me. Now, I'm all for this option, but my husband isn't quiet on board yet. I totally understand it. The dr told us it usually takes men up to 6 months to process the shock and fully come to term that a donor may be the best option. 
Option 3 Adoption. Which I really think we can all agree is a great option. Honestly though Option 3 would be my last option if I had to choose. I want to experience a pregnancy with my husband. I want to go to all the appointments together, see and feel the baby move, I want to be able to nurse a child. So if anyone has any insight on this I would greatly appreciate it. Thank you so much!!!


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## silverbell

Hi lashea

I'm so sorry you find yourself here. It's a horrifying diagnosis to receive for both involved and really is severe infertility when zero sperm are found in the SA.

I would just say that you need to do what's right for you both. It sounds like you've only just found out about the Klinefelter's, so it makes sense for your DH not to be on board with donor sperm just yet as he needs to process the fact that he has a genetic condition and more than likely cannot ever father a child.

My DH underwent microTESE under a general where they cut open the testicle and search for sperm. The Consultant gave him a 5% chance of success and this percentage was based on the numbers of patients he'd done this procedure on who had Klinefelter's Syndrome. Sadly more often than not a man with Klinefelter's Syndrome will not be producing and has never produced sperm and my husband was one of them (but do bear in mind that there is sometimes success with this procedure too).

Adoption was the last option for us too. It's not a quick or straightforward process in the UK at all and this has put us off. I don't think there's anything wrong with wanting to experience pregnancy and the appointments and scans and birth together.

Sadly although I got pregnant using both donor sperm and donor eggs late last year I miscarried and have had 2 BFN FETs since and used up our frosties now. We're currently having to make the heartbreaking decision about whether to continue using donor embryos or just go with adoption and put our dreams about me being pregnant to bed forever.

Give it time and your course of action should become clear to you both. Wishing you both lots of luck and best wishes.


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## searching333

Hey all

First of all, I'm a guy but I was recently diagnosed with azoospermia (1 SA only, waiting to get an appt for the 2nd) after 1.5yrs of TTC with my wife. We're obviously taking it really hard. We cry every day and I'm pretty sure I'm approaching clinical depression if not already there.

I've been reading forums non-stop, including this one. I have a karyotype pending, but I'll be surprised if I don't have Klinefelters based on physical characteristics about myself (small testes, wide hips I think, some gynecomastia)

This is one of the better post I've seen and I've enjoyed reading yall's journeys about TTC with klinefelters in the mix. Any updates on how people are doing? I'm looking for some insight, encouragement, anything. I'm not a forum person AT ALL. I kind of can't believe I"m doing this right now. I feel numb. And I feel fragile and scared.

Thanks all.


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## mimi4

> So if they don't my husband will have to go through more traumatic news and have the actual scar to prove it. If it does work though we have a high chance that our child would have infertile issues as well. Then to top it off it's around $20 to $30 thousand!!

Have you considered doing PGS NGS that detects Klinefelter Syndrome (here more) More than that I have read that many ladies undergo IVF at overseas clinics cos of pocket friendly prices.


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