Hi

anyone out there dealing with XXY?

I need someone to talk to

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

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

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.

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?

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.

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!

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.

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?

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:

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

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)