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Old Feb 21st, 2012, 04:05 AM   11
silverbell
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Originally Posted by theclarks8687 View Post

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!

Quote:
Originally Posted by Stardust1 View Post
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:

http://www.babyandbump.com/problems-...oospermia.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.



 
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Old Feb 21st, 2012, 04:26 AM   12
clarkea
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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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Old Feb 21st, 2012, 04:33 AM   13
silverbell
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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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Old Feb 21st, 2012, 06:40 AM   14
theclarks8687
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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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Old Feb 21st, 2012, 06:44 AM   15
theclarks8687
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Quote:
Originally Posted by Stardust1 View Post

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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Old Feb 22nd, 2012, 06:30 AM   16
clarkea
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Originally Posted by silverbell View Post
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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Old Feb 22nd, 2012, 06:34 AM   17
clarkea
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Originally Posted by theclarks8687 View Post
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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Old Feb 22nd, 2012, 06:36 AM   18
clarkea
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Quote:
Originally Posted by theclarks8687 View Post
Quote:
Originally Posted by Stardust1 View Post

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)?



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Old Feb 22nd, 2012, 09:12 AM   19
theclarks8687
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Quote:
Originally Posted by clarkea View Post
Quote:
Originally Posted by theclarks8687 View Post
Quote:
Originally Posted by Stardust1 View Post

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.



 
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Old Feb 22nd, 2012, 09:13 AM   20
theclarks8687
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oh sorry quicker then I thought http://todayhealth.today.msnbc.msn.c...e-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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