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Old Feb 20th, 2012, 05:08 AM   1
silverbell
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Dealing with Klinefelter's Syndrome / XXY? Come here for friendship and support


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:

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



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



 
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Old Feb 20th, 2012, 09:19 AM   2
froliky2011
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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!!



 
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Old Feb 20th, 2012, 11:08 AM   3
theclarks8687
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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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Old Feb 20th, 2012, 14:45 PM   4
Stardust1
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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.



 
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Old Feb 20th, 2012, 15:14 PM   5
theclarks8687
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Quote:
Originally Posted by Stardust1 View Post
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.



 
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Old Feb 20th, 2012, 15:51 PM   6
Stardust1
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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.



 
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Old Feb 20th, 2012, 16:39 PM   7
theclarks8687
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Deep down they all do. Even my "tough guy" broke down and cried last month about it.



 
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Old Feb 20th, 2012, 18:23 PM   8
froliky2011
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Quote:
Originally Posted by theclarks8687 View Post
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.



 
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Old Feb 20th, 2012, 18:25 PM   9
Reb S
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Frolicky - so sorry for your loss x



 
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Old Feb 20th, 2012, 19:05 PM   10
froliky2011
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Reb - Sorry for yours too!!!



 
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