XXY

[clarkea]

Hi

anyone out there dealing with XXY?

I need someone to talk to

 

[Stardust1]

Hi there, we have been ttc for 18 months and my husband was diagnosed with xxy klinefelters syndrome in January after two azoospermic semen analysis. I was completely devastated when we got the diagnoses and our fertility specialist told us that our only chance was donor sperm and that there was nothing more he could do for us. We have found a ivf clinic and we have our first appointment next week and I'm just really hoping that they will tell us we still have a chance using tesa and icsi but I'm not getting my hopes up. X x

 

[clarkea]

HI
Its actually nice to find someone who is dealing with the same thing.
We have been ttc for 7 years. My husband was diagnosed around April last year after loads of tests in St Marys Manchester. But we havent been told the same as you. We have been told that there is a chance to retrieve sperm if he has TESA. We went on the waiting list to have this followed by PGD (pre-implantation genetic diagnosis)(this would have had to be done at Guys hospital london) and IVF.
After nearly a year of being on the waiting list at St marys (who said the waiting list was only a year) i phoned them the other day and they said it could now possibly be next year by the time we can do IVF/TESA
i wasnt happy with this obviously so i phoned Liverpool womens hospital who said they dont have a waiting list for this. They have said that they dont do PGD their so we have decided against this.
We are now just waiting for the referal to go through and then we can start the process of another blood test and then TESA/Ivf.

i hope this isnt to mind boggling, there's just so much to tell its hard to get it all out.

Have you not even been offered TESA?
Are you going private or NHS?

x

 

[Stardust1]

We are having to go private since I have a child from a previous relationship but before the klinefelters diagnosis we were told we might be able to get NHS funding being as the problem was with my husband and he has no children but I guess if we used donor sperm it takes my husband out of the scenario, anyway I'm waiting to here what they have to say at the ivf clinic.

 

[Stardust1]

We were originally told after the first zero sperm analysis that Tesa and icsi would be our next step but then the chromosome testing came back and the specialist told us we had three options 1- using donor sperm and either IVF or IUI 2- to look into adopting and 3- to notch the whole experience to being "one of those things" and carry on with life. I must admit I felt I'd been kicked in the teeth, there wasn't even any info for my hubby on the condition, the dr had lost the book that had been sent with the chromosome results and everything we now know I had to research myself. Is your husband on any medication?

 

[clarkea]

i understand how you feel! To be told what the problem is was devestating for us too.
I feel like i am an expert on XXY. When we went for genetic councelling i told the doctor more then he knew!
The thing with the chromosome testing we were told is that they only test a certain part of it which means there is still hope!
Have you heard of mosaic?
The options you mention are the options we were given. They also said though that tesa is an option with only 5% chance of success but someones got to be in that 5% hey?
He had his hormone level checked which apparently is on the upper side of 'normal' which increases the chance of sucessful tesa.
There is a chance though and hopefully you will have the same chance. Im not sure why you wouldnt.
When they offered us tesa they said that it would be very risky and that they might hit his hormone things but we have decided its a chance we are willing to take.

Which hospital are you with?

No hes not on any medication. We went to an endocrinology appointment who said that he might need hormone injections for the rest of his life but they didnt want to start messing with the hormone level before IVF.
What about your husband?

I cant believe they lost the booklet! I f you need to know anything i will try and help.

I think you should have hope. You never know like i said before, apparently they only test a certain part for chromosomes so not 100% no chance.

 

[silverbell]

Yep, DH has Klinefelter's. We found out last July after 2 x SAs in June proved no sperm at all. He had a microTESE done in January this year which unfortunately showed not a single sperm and no signs at all of sperm production.

We are now going down the sperm donor route and we are now getting so excited for the first time in a very long time.

I'm still glad we found out for sure via an operation - it has made our choice to use donor sperm far easier knowing that DH hasn't got any chance at all of fathering his own children if that makes sense. I know there are some couples who choose to go straight to donor sperm without having checked, but we just felt it was something we had to do.

There is a genetics service in Salisbury called the Wessex Genetics Centre who will provide counselling/information regarding Klinefelter's if you can get your GP to refer you. DH is now considering doing this, as he wishes to know more about the long-term impact of the syndrome.

If anyone has any questions at all, please let feel free to PM me as I know a lot about this subject now!

I must admit I felt I'd been kicked in the teeth, there wasn't even any info for my hubby on the condition, the dr had lost the book that had been sent with the chromosome results and everything we now know I had to research myself.

Stardust - I am more than happy to copy the 2 x booklets that were sent to my DH's doctor with his test results. They're really useful and handy and I'm very happy to copy and post these to you. I see you're just across the water from me PM me if you're interested.

 

[clarkea]

Hi Silverbell
im so sorry that your husband showed to have no sperm with the microtese. Im sure that was devastating for you both
Thats the way we feel. my husband and i agreed that we would exhaust all opportunities of a baby fathered by my husband before we consider doner sperm. Its not really what we would want but if e know its the only possibilty then we have agreed it would be the next best option.
We are being messed around at the hospital alot! They first told us that it would be carried out within a year but then when i phoned up the other day to find out where we were on the list they said it could now be next year! We are trying to get transferred from Manchester to Liverpool but they said they need to try and get the funding transferred which could take up to a month!
Another blow as we have already waited a year!
What did your husbands hormone level come out at? Do you remember?
How is he taking the thought of doner sperm? I can imagine not great.
You sound very hopeful of the doner sperm which is nice to hear!
I cant believe its taken me so long to find this forum, its nice to talk to someone who really understands.
We didnt get any booklets, should we have received something already so you think? Does it just explain about XXY?

 

[silverbell]

Hi Silverbell
im so sorry that your husband showed to have no sperm with the microtese. Im sure that was devastating for you both

What did your husbands hormone level come out at? Do you remember?
How is he taking the thought of doner sperm? I can imagine not great.
You sound very hopeful of the doner sperm which is nice to hear!
I cant believe its taken me so long to find this forum, its nice to talk to someone who really understands.
We didnt get any booklets, should we have received something already so you think? Does it just explain about XXY?

Hi clarkea

Yes, it was truly devastating. Lots of tears I'm afraid. We had been given a 5% chance of success before the op though, so we had been prepared ... but still nothing can really prepare you to hear that they didn't find anything.

DH had 14.2 iu/L LH and a high FSH of 34.5 iu/L as well as low Testosterone at 8.8 nmol/L. I have to tell you though that you mustn't read too much into the numbers - I have did a lot of research on this and we were under the care of the UK's expert and the numbers don't mean too much - they have found sperm in those with high numbers and sperm in those with normal and they've not found sperm in those with similar results - it really just depends on the person and they won't know for sure without operating on them.

Obviously in the ideal world we would have own biological baby the 'normal' way, but we have had a long time to accept this isn't going to happen (we found out about the zero count last June and of the Klinefelter's last July). So now we are just ever so excited about the donor sperm - my DH has been absolutely great about it and is just excited now. For the first time ever there's a chance I could get pregnant next month and he's really excited about that.

We were sent the booklet from the Wessex Genetics Service who did DH's genetics tests - they sent them to our GP with his results. Yes, it's all about Klinefelter's and how it's caused and what it means in the future.

DH has seen an Endocrinologist and needs to go on Testosterone replacement therapy for life but we were waiting until the op was out the way before going ahead, as having artificial Testosterone will actually wipe out any sperm that are being made. He's seeing them again in 3 weeks' time when hopefully they'll start him on the TRT.

Hope this helps and good luck.

By the way, if you're interested there's a very friendly and very active azoospermia thread here:

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

Whilst not everybody there is dealing with Klinefelter's, everybody there is suffering with the severe infertility that is azoospermia (zero sperm count in ejaculate). There's plenty of support, help and advice there and everybody there knows how you're feeling.

 

[clarkea]

I was going to say how do you prepare yourself to hear that news! Its unbearable to even think about!
You sound like you have got your head around that though so that good.
I really hope they do find sperm when then do the retrieval. Not sure how to prepare for the worst. Dont even want to think about that.
Your treatment seems to have progressed fast? Are you private?
We are on the NHS because we know that in the future we will have to pay so we thought we would go first on the NHS.
Im glad that your DH has been great about it. Your in it together and thats pobviously what youneed when your going through what you are. I can imagine that it took time to come to terms with it.
Regarding the booklets - i did all my research on the internet but doesnt say that it will affect the future in any way?
I might have to find out how i can get hold of some just to make sure i know all the facts. One doctor told us that we would never be able to have a boy as he would inherit the gene while another told us that we could and its 50/50.
No wonder i dont know whats going on we keep getting told different things.
We have been offered PGD if they find sperm but we have recently decided not to do this and that what will be will be.
They said that if they do find sperm and we have IVF then there is a chance the baby would have down syndrome. Again we said what will be will be.
Why do PGD when we only have a small chance anyway.

We got told the same thing at the endocrinology unit. Treatment for the rest of his life and that they dont want to do anything yet. We have another app in April to see them but not sure what for as we wouldnt have even started IVF yet. We dont even know when it will be. I think thats the frustrating pat, not knowing when all this will happen.
You sound very positive about it all. I wish i could feel abit more like that. Some days its really hard.
Thanks for the thread i will have a nosy at that.
So what happens next month with you then? Have you alreeady picked your doner sperm?(if thats what you do)

 

[silverbell]

I was going to say how do you prepare yourself to hear that news! Its unbearable to even think about!
You sound like you have got your head around that though so that good.
I really hope they do find sperm when then do the retrieval. Not sure how to prepare for the worst. Dont even want to think about that.
Your treatment seems to have progressed fast? Are you private?
We are on the NHS because we know that in the future we will have to pay so we thought we would go first on the NHS.
Im glad that your DH has been great about it. Your in it together and thats pobviously what youneed when your going through what you are. I can imagine that it took time to come to terms with it.
Regarding the booklets - i did all my research on the internet but doesnt say that it will affect the future in any way?
I might have to find out how i can get hold of some just to make sure i know all the facts. One doctor told us that we would never be able to have a boy as he would inherit the gene while another told us that we could and its 50/50.
No wonder i dont know whats going on we keep getting told different things.
We have been offered PGD if they find sperm but we have recently decided not to do this and that what will be will be.
They said that if they do find sperm and we have IVF then there is a chance the baby would have down syndrome. Again we said what will be will be.
Why do PGD when we only have a small chance anyway.

We got told the same thing at the endocrinology unit. Treatment for the rest of his life and that they dont want to do anything yet. We have another app in April to see them but not sure what for as we wouldnt have even started IVF yet. We dont even know when it will be. I think thats the frustrating pat, not knowing when all this will happen.
You sound very positive about it all. I wish i could feel abit more like that. Some days its really hard.
Thanks for the thread i will have a nosy at that.
So what happens next month with you then? Have you alreeady picked your doner sperm?(if thats what you do)

Not sure how we really prepared ourselves - we were both just very realistic about everything. It's nice to have a bit of hope, but when you're given a 95% chance of failure then you have to face facts and realise that it's pretty certain it's going to be a bad result. We felt it was important to think the worse so we were as ready for it as we could be.

We were on the NHS for DH's op, but once we got his results and told my Gynae that we wanted to use donor sperm with IUI we were told that in our area (south England) they won't fund any IUI (I believe the recommended guideline is that they fund 6). We were really shocked. So we've had to go privately now. We can only afford 3 tries, so we're praying we get lucky fast.

With regards to the future, there's an increased risk of osteoporosis (bone problems) and also a higher risk of breast cancer. Those are the 2 main problems. I am happy to copy the leaflets and send to you if you wish - just PM me your address if you're interested.

We had been told that if any sperm was found then 50% of it would have Klinefelter's and 50% would be OK. We wanted to make sure that no child of ours had this horrible disorder passed down to them by us, so we would have gone with the PGD if sperm had been been found. We just couldn't bear any child of ours having to go through this exact same thing when they got older. Plus, it's not just the infertility - some guys can really struggle mentally and have lots of learning problems. It seems my DH was lucky and really only has the infertility as a symptom. It could have been much worse.

For us, the waiting for DH's op was absolutely horrendous. We just wanted to know either way so we could accept it, deal with it and move on to our next step. The not knowing was definitely very difficult to deal with and indeed the hardest period of our lives to date.

I think you have to stay positive or else you'd sink into depression. Azoospermia is such a shocking and upsetting diagnosis to receive. We just feel so grateful that other options are open to us and it's not the end of our dream of a family.

Next month I have to call the clinic when I get my next AF and then they'll get me in to show me how to do the injections to make my eggs super-duper and then they tell me when to do the trigger injection and then they call me in a day or 2 later for the actual insemination procedure. Yes, we chose our donor sperm recently from a list we were given of 9 men - you just get the basic stats - eye colour, height, hair colour and build. We obviously chose as close to my DH as we could. It's very surreal picking a biological father from a list, but exciting too in a way. Sometimes I wish we knew more about him, but other times I think it's easier not to (as I'm sure you'd find something you didn't like or that wasn't exactly like your partner or something, which would make the selection process even more difficult).

Anyway, hope this all helps.

 

[Stardust1]

Silverbell where are you having your treatment? I'm so sorry they found no sperm,How was the operation for your husband? Before we found out about the klinefelters we were told that tesa or mesa would have to be done and my husband was horrified by the thought. We are going to the complete fertility centre at the princess Anne hospital in Southampton, our initial consultation is on the NHS and after that we pay. Our first appointment is this Thursday so any advice on what to ask? My husband is in the same boat, the only symptom he appears to show is the infertility although our GP says that his height is down to the condition, he's 6'3".

 

[theclarks8687]

So this is where all the XXY's wives are. Ive been lurking around for a bit now and hadnt seen a hint of someone else like us. I was starting to feel very left out lol

 

[silverbell]

Silverbell where are you having your treatment? I'm so sorry they found no sperm,How was the operation for your husband? Before we found out about the klinefelters we were told that tesa or mesa would have to be done and my husband was horrified by the thought. We are going to the complete fertility centre at the princess Anne hospital in Southampton, our initial consultation is on the NHS and after that we pay. Our first appointment is this Thursday so any advice on what to ask? My husband is in the same boat, the only symptom he appears to show is the infertility although our GP says that his height is down to the condition, he's 6'3".

We saw Mr Ramsay privately in Windsor to speed things along and then we got our GP to do an NHS referral to him at Hammersmith in London for the microTESE, which he had in January. The operation was OK - DH had more trouble with the tight jockstrap he had to wear afterwards (very fetching), as it was digging into him. I don't think it was half as painful as he'd imagined.

I'm now having private donor IUI in Southampton.

When you say your first appointment and what to ask - is this your first appointment regarding your DH or regarding you?

My husband is 6 foot, but I did always find it odd as his parents and sisters are not as tall and his parents are in fact quite short. Also he has a pigeon chest - though we're told this is unrelated to the Klinefelter's. It's funny though - as soon as I saw an image of a guy's body on the internet with Klinefelter's after we found out about the azoospermia, I told DH that I was convinced this what he had. He looked just like the guy - carries all his weight on his abdomen only with thin arms and legs and not much muscle.

So this is where all the XXY's wives are. Ive been lurking around for a bit now and hadnt seen a hint of someone else like us. I was starting to feel very left out lol

Hey, fingers crossed for this cycle for you!

 

[clarkea]

I was going to say how do you prepare yourself to hear that news! Its unbearable to even think about!
You sound like you have got your head around that though so that good.
I really hope they do find sperm when then do the retrieval. Not sure how to prepare for the worst. Dont even want to think about that.
Your treatment seems to have progressed fast? Are you private?
We are on the NHS because we know that in the future we will have to pay so we thought we would go first on the NHS.
Im glad that your DH has been great about it. Your in it together and thats pobviously what youneed when your going through what you are. I can imagine that it took time to come to terms with it.
Regarding the booklets - i did all my research on the internet but doesnt say that it will affect the future in any way?
I might have to find out how i can get hold of some just to make sure i know all the facts. One doctor told us that we would never be able to have a boy as he would inherit the gene while another told us that we could and its 50/50.
No wonder i dont know whats going on we keep getting told different things.
We have been offered PGD if they find sperm but we have recently decided not to do this and that what will be will be.
They said that if they do find sperm and we have IVF then there is a chance the baby would have down syndrome. Again we said what will be will be.
Why do PGD when we only have a small chance anyway.

We got told the same thing at the endocrinology unit. Treatment for the rest of his life and that they dont want to do anything yet. We have another app in April to see them but not sure what for as we wouldnt have even started IVF yet. We dont even know when it will be. I think thats the frustrating pat, not knowing when all this will happen.
You sound very positive about it all. I wish i could feel abit more like that. Some days its really hard.
Thanks for the thread i will have a nosy at that.
So what happens next month with you then? Have you alreeady picked your doner sperm?(if thats what you do)

Not sure how we really prepared ourselves - we were both just very realistic about everything. It's nice to have a bit of hope, but when you're given a 95% chance of failure then you have to face facts and realise that it's pretty certain it's going to be a bad result. We felt it was important to think the worse so we were as ready for it as we could be.

We were on the NHS for DH's op, but once we got his results and told my Gynae that we wanted to use donor sperm with IUI we were told that in our area (south England) they won't fund any IUI (I believe the recommended guideline is that they fund 6). We were really shocked. So we've had to go privately now. We can only afford 3 tries, so we're praying we get lucky fast.

With regards to the future, there's an increased risk of osteoporosis (bone problems) and also a higher risk of breast cancer. Those are the 2 main problems. I am happy to copy the leaflets and send to you if you wish - just PM me your address if you're interested.

We had been told that if any sperm was found then 50% of it would have Klinefelter's and 50% would be OK. We wanted to make sure that no child of ours had this horrible disorder passed down to them by us, so we would have gone with the PGD if sperm had been been found. We just couldn't bear any child of ours having to go through this exact same thing when they got older. Plus, it's not just the infertility - some guys can really struggle mentally and have lots of learning problems. It seems my DH was lucky and really only has the infertility as a symptom. It could have been much worse.

For us, the waiting for DH's op was absolutely horrendous. We just wanted to know either way so we could accept it, deal with it and move on to our next step. The not knowing was definitely very difficult to deal with and indeed the hardest period of our lives to date.

I think you have to stay positive or else you'd sink into depression. Azoospermia is such a shocking and upsetting diagnosis to receive. We just feel so grateful that other options are open to us and it's not the end of our dream of a family.

Next month I have to call the clinic when I get my next AF and then they'll get me in to show me how to do the injections to make my eggs super-duper and then they tell me when to do the trigger injection and then they call me in a day or 2 later for the actual insemination procedure. Yes, we chose our donor sperm recently from a list we were given of 9 men - you just get the basic stats - eye colour, height, hair colour and build. We obviously chose as close to my DH as we could. It's very surreal picking a biological father from a list, but exciting too in a way. Sometimes I wish we knew more about him, but other times I think it's easier not to (as I'm sure you'd find something you didn't like or that wasn't exactly like your partner or something, which would make the selection process even more difficult).

Anyway, hope this all helps.

See i think we are more the other way round, we think someone must be in that 5% and are hoping and praying that we are in there.
I think we will will take things one step at a time. If no sperm then obviously we will have to deal with that but need to keep hopeful for now.

Im hoping you get lucky with regards to the doner sperm. I dont even know how much that would cost! I cant believe they dont do NHS for that! Its all wrong! Hopefully fingers crossed you get lucky on the first go.

I think they say more chance of breast cancer due to the extra tissue in the breast. My husband doesnt have any extra breast tissue. I think its just the same chance as a lady so im not too worried about that. Fingers crossed.
My husband only has the infertility symptom aswell. When the doctor saw him he asked if it has actually been confirmed that he is xxy! He is 6ft but all his family are tall. He has lots of muscle everywhere (apparently its hard to gain muscle). My husband has had no problem in this area and looks just so normal.

We were offered PGd but recently decided against this as the chances of retrieval are small anyway we didnt want to increase the risk of having none as PGD can cause the embryo to be damaged.
We thought if we have a baby and he happenes to have xxy. BY the time our baby is ready for children the research hopefully will be more advanced and able to do something.
We were dead against doing it at first, its took ages to decide why not to do it. I hope we are doing the right thing but i suppose we will never know.
I know everyone has their different opinions and i totally understand why you would want to do it given the chance. Its been 50/50 for us for a long time so it was just the final decision that made us go without it.

i agree the waiting to find out if any there has been by far the worst part of our lives! apart from finding out he is xxy.
Its just so hard to wait while people around me keep having babies! I think theres something in the water up here at the minute! (give me some lol)

oh im so excited for you, i really hope all goes to plan. i bet it was weird picking the doner! your in it together though arnt you. I cant wait till im further down the line so it can be my time.
Its nearly next month already lol. i really hope you have good luck x

 

[silverbell]

Hey ladies.

I've started a new thread specifically for those of us dealing with Klinefelter's Syndrome / XXY. I'd been thinking of doing it for a while, as there's nowhere we can all really meet up in a support thread sort of thing.

I hope you'll all join and subscribe and we can get chatting, share our stories and get the complete understanding from others in the same position.

https://www.babyandbump.com/assiste...yndrome-xxy-come-here-friendship-support.html

 

[theclarks8687]

So this is where all the XXY's wives are. Ive been lurking around for a bit now and hadnt seen a hint of someone else like us. I was starting to feel very left out lol

Hey, fingers crossed for this cycle for you! [/QUOTE]

Thank you!