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
“should find another”

But he is my husband
I’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’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



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

 

[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. 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. again!! Hang in there!!

 

[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.

 

[Stardust1]

Hi there great idea for a thread
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.

 

[theclarks8687]

Hi there great idea for a thread
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.

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.

 

[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.

 

[theclarks8687]

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

 

[froliky2011]

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.

 

[Reb S]

Frolicky - so sorry for your loss x

 

[froliky2011]

Reb - Sorry for yours too!!!

 

[silverbell]

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!

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.

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 today after a FET I'm over the moon for her!

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

 

[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

 

[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!

 

[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.

 

[theclarks8687]

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.

 

[clarkea]

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!

 

[clarkea]

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!

 

[clarkea]

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.

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

 

[theclarks8687]

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.

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

Hold on and I will try to find that article.

 

[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.