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

[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

 

[clarkea]

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

 

[theclarks8687]

Congrats hun, he is georgous

 

[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]

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...

 

[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!

 

[clarkea]

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

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.

 

[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]

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]

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.

 

[silverbell]

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 ).

 

[theclarks8687]

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

 

[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

 

[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.

 

[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]

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]

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