[AussieVA]

Does anyone else have a husband with Klinefelter's Syndrome? We about to start IVF with ICSI, MESA/TESA and donor backup. Just wondering anyone had experienced success with testicular harvesting from a Klinefelter's sufferer. Thanks

[Kris79]

Aussie - My DH also has KS. We were not able to find sperm...but did just have a son using donor sperm. We of course were disappointed he didn't have sperm of his own, but I'm positive we couldn't love our little boy more if he shared genetics with DH.

Best wishes to you and your DH...I'm hoping you find sperm and get pregnant soon!

[kitty2010]

Aussie- My husband got a diagnosis of Klinefelters in December. Our insurance doesn't cover IVF and we cannot afford to pay for it out of pocket. I also read (not sure if this is verified), that it is possible to pass along the generic disorder. So for those reasons we are looking into IUI using donor sperm.. Wishing you the best!

[jfratts]

Aussie- My DH also has KS. He had a TESE last Oct. and they found sperm. We did an IVF cycle, but we didn't get pregnant. We had 4 frozen vials. We did a second IVF cycle in Dec. again now we are getting ready for IVF #3 we have 2 vials left, but have been advised to do DS back up. I am torn between taking my chances with just DH's sperm and having back up so we won't waste another cycle.
It has been a roller coaster.

I wish you luck. I hope they find sperm. If you need to vent or talk I am here.

[AussieVA]

Thanks this gives us some hope that the Dr may find viable sperm during the search and rescue mission. We wish you luck too.

[AussieVA]

Thanks. I understand about the insurance and the IVF. We are lucky to be in the position where it is a possibility. We are looking at about $25K, however the repro centre we are going to offer a a great program that offers a refund after 3 failed cycles (which is actually 6 inseminations, fresh then frozen). As far as KS being hereditary, the current research and thoughts are that the causes are mutations caused by nonhereditary factors, thus is not passed throught he generations. We wish you luck with the IUI. My DH is fine with either his or donor, he just wants the final result. Myself, I'm still unsure it is rather surreal. Good luck

[AussieVA]

Originally Posted by Kris79

Aussie - My DH also has KS. We were not able to find sperm...but did just have a son using donor sperm. We of course were disappointed he didn't have sperm of his own, but I'm positive we couldn't love our little boy more if he shared genetics with DH.

Best wishes to you and your DH...I'm hoping you find sperm and get pregnant soon!

Congratulations. I am glad to hear of the love you have for your little boy. This gives me hope.

[AussieVA]

My family know of the whole process including the option of donor sperm, my husband's aunt and cousin know plus our closest friends and everyone is so supportive and positive. Instead of the usual...when are you having children question, they ask when do we start the IVF. However, we have not told my DH's parents', as in the past my MIL has experience her religious beliefs and opinion that she could never accept a child that was not conceived naturally and that repro tech is not acceptable. My DH has heard this ever since he was in his late teens. His parents severed contact with us almost a year ago, after he was diagnosed with depression and PTSD after returning from the desert. They do not know about the KS diagnosis or that my DH had a testicular biopsy and mapping in December. I wish that we could share this journey with them and ut breaks my heart that they refuse to return our calls (we have since stopped trying). We have decided that we will never tell them the origin of the first born grandchild (when he/she arrives) as we fear that they will reject the child due to fact that we are using IVF and possibly a donor. Are we wrong in not telling them the full details?

[kitty2010]

This is the info I found...
"Infertility in men with Klinefelter syndrome is caused by a precipitous drop in sperm count.11 If sperm are present, cryopreservation is useful for future family planning with intracytoplasmic sperm injection, and if not, testicular sperm extraction may be pursued.12 Although there have been multiple reports of successful fertilization by men with Klinefelter syndrome, genetic counseling is essential because of the increased risk of autosomal and sex chromosome abnormalities.13"

from : Klinefelter Syndrome - December 1, 2005 - American Family Physician

My husband has had a lot of lifelong issues due to the Klinefelters, that he would not want to risk passing on. But I will admit we did not research it much further, seeing as though we cannot afford the IVF...

[MetaHari]

I'm still in shock. We knew this was one cause of azo, but he has no obvious symptoms. Dr. advised there's no point in trying Clomid et al ... his testosterone, FSH, and LH are already elevated (trying to compensate), so boosting would have no effect. MicroTESE/IVF, donor sperm, and adoption are basically the only options on the table... so nothings really changed, except that I'm a little gobsmacked by the dx because DH doesn't have low testosterone or any of the typical Klinefelters symptoms that go with it.

[StephIVF]

MetaHari - no obvious symptoms with my DH, either...a few match once you know about them & really try to match them up but we were shocked, too....

Here's our story:
We got our KS diagnosis in April. We went thru the counseling sessions on donor sperm but decided against it (at least for now). We decided that we wanted to take our chances (40% according to our doc) on on finding sperm from DH before we chose a donor profile. Since then, we've been thru one Stim Cycle of IVF with an open testicular biopsy on the day of egg collection. I had 8 healthy, usable eggs and they managed to find 6 sperm during the open biopsy. So, 6 eggs were fertilized using ICSI. (other 2 eggs frozen) Only 1 of them made it embryo transfer day but, according to our fertility specialist and the lab tech, it was beautiful looking. Well, I got my period 12 days later. : ( The FS said that we'd need to wait a cycle before going again to ensure that there was no swelling left in the testicles before the next biopsy. So, I am waiting for my next period so that we can do it all again! Of course, we are back to the 50/50 odds that the FS will even find any sperm during the open biopsy. The 'dream' would be a successful open biopsy with some embryos to spare so that we can do a thaw cycle next, if need be...not sure when we'll be able to afford attempt #3 if this one does not work.

On the topic of doing something/anything to encourage sperm production: our FS said that there was nothing that could be done, an endocrinologist that specializes in testosterone related sydromes/diseases agreed with him. However, my DH has been seeing a Chinese herbalist that specializes in fertility since the 1st of June. We figured it couldn't hurt and might help! Plus, at least we get to go into the open biopsies feeling as if we'd done something that could contribute to a successful outcome. We'll never know if the herbs/cupping/acupunture/venison/oysters are making a difference but, if DH stopped all of that and no sperm are found next time, we would definitely wonder if the ceasing of the herbs hurt our chances.

I know that we do not have the fairy tale story with a happy ending (yet!) but we are hopeful about the real possibility of a pregnancy - we felt so close last time! We were so grateful that sperm were found and we had an embryo transfer day but we really, really need to get to the next step this time - our BFP!

Not sure how long we'll keep this up before we revisit the DS conversation. The emotional highs and lows of IVF are so overwhelming at the moment - maybe it gets easier the 2nd time around?

[MetaHari]

@StephIVF Totally. The language disability and being tall seemed dead on... although he could also have gotten both those things from his own dad.

The emotional stuff is so, so hard. I guess I don't have to tell you. In our case, I think I was OK with any option... and he was the one whose choices were taken away by biology, so, I wanted this choice to be his. If it were reversed, I'd have been working 3 jobs to save up for IVF but he almost immediately decided on DS... I think with so much disappointment, he just felt he couldn't handle working so hard for something that may well not work. DS means the best chance of putting his diagnosis behind him and moving forward with our plans to start a family.

So we finally did our first IUI this month and I'm in my 2ww now...

But it's funny, I was sooo squeamish about even bringing up DS to him (I'd pretty much accepted we might just not have children) and then of course the dr.'s did... I could not have been more shocked when he immediately decided that was the best option, but got over that quick & now I've had enough time to rationalie that I'm totally comfortable with it. Except when I'm agitated about what a gd racket it is that our health insurance doesn't cover a freaking dime of it :-P

[jfratts]

Hi ladies,
I just wanted to say that getting this DX was heartbreaking. We attempted 2 cycles with DH sperm which was found during TESE and both resulted in BFNs. We did our 3rd cycle with donor back which we ended up needing and using. My DH does not talk easily about using DS which makes it very difficult at times, but the one thing I know is he loves our daughter like his own. He may still struggle, but I don't think he doubts his love for her. We are also currently 11 weeks with our 2nd from the same DS.

I know DS isn't for everyone and I never thought it would be how I would get a family, but I can't imagine my life without my little girl. And of course my new little one on his/her way.

I wish you all the best on this journey and I hope you all find the right path for you and your DH.

[StephIVF]

Thought I should post again because we have more positive news to share with other couples dealing with a diagnosis of Klinefelter's syndrome.

We did a 2nd stimulated IVF/ICSI cycle in September with another open biopsy. This time, they got 9 viable eggs from me and 8 sperm from DH (2 more than last time!). The big difference, though, was that out of the 8 eggs that they fertilized, 5 of them made it! My DH continued on the herbs and acupuncture, cupping, etc. and it had been about 90 days of treatment before the 2nd open biopsy (which was the minimum amount of time the Chinese herbalist requested in order to made a difference). We had 2 of great quality transferred on day 2 and the other 3 frozen. Unfortunately, we got another BFN. BUT, we had those 3 fertilized eggs frozen and that was a fantastic feeling.

About 4 hours ago, I had 2 of them transferred! WE did a day 3 transfer this time & had one 5 cell and one 7 cell that both looked pretty good. The 2ww begins with one more fertilized egg still in the 'freezer'!

I hope that this gives a bit of hope to someone out there. We are feeling so blessed with the success that we've had so far and so lucky to have such a wonderful doctor!

[Ty&NicBradley]

Hi I am new the forum. My DH also have a Dx of KS. He had many of the symptoms and problems that went along with KS but I think until we met and got married he was to afraid to know FOR SURE what was wrong. We got our DX in July and he immediatly decided Ds was the only way to go due to his counts being negative for many years and his long term use of testosteron. For us just knowing what was causing all the problems was a HUGE relief. Our first RE appt was in Sept and after all my test came back perfect our first IUI was in Nov but . Just started second cycle with Clomid x 5 days and will do a trigger with HCG after my follicles are large enough. SO that time time I have at least 2 mature follicles (if not ready on first check will wait this time until at least 2 are totally mature) and looking at poss insemination date of 12/12/12.