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

[MadCatLady]

Hi, thank you both for your replies! Clarkea - can I ask where your DH had his testicular biopsy? Was it also only in London? Silverbell, I've now emailed Mr Ramsay as I think DH would want to try and exhaust all possibilities with him first and if he is the one to do mTESE then think we need to go and at least chat.

I emailed Mr Schlegel in New York and he was very helpful in terms of why his success rates in finding sperm was so much better than the UK, however he then told me it would be $45,000 to go for the surgery and timed IVF etc which is somewhat outside of what we can afford. Just waiting to see hear from Mr Ramsay now and after that I don't know.

Really useful to hear from you, and I'm glad I found this forum

 

[silverbell]

Good grief that's a ridiculous amount of money, especially with no certainties. Blimey.

From what I remember Mr Ramsay said Dr S has the very best equipment in the US with incredible microscopes. I remember he was very envious. But we knew Mr R was the best in the UK and that was enough for us.

I'm glad we've been helpful and don't hesitate to ask any other questions.

 

[clarkea]

Biopsy was done at Liverpool womens hospital by Dr Lewis Jones. X

 

[LouisaAce]

I had to go to a baby shower today (ALOT of babies, toddlers etc...), with my younger sister who is expecting twins. All the talk of babies (especially my sisters), proved to be a little too much by the end.

We are still roughly 3-4 months away from starting IVF with donor sperm. At first I was excited about it, recently I'm getting terrified about all the things that could go wrong, especially as I don't know how we'd afford another round if it doesn't work first time.

So I guess I just needed to vent somewhere where people understand. Advice/ coping strategies greatly appreciated!

 

[silverbell]

clarkea - sorry to read in your signature about the OHSS and that you have to wait 3 months, but that's a great number of fertilised embies waiting for you and at least you'll be fully fit and ready when they're transferred. I hope you're feeling a bit better with regards to the OHSS now.

Louisa - I think that would be too much for any of us here and indeed for most people dealing with infertility.

The only coping strategy I can think of with regards to the 3-4 months' wait is to fill it by doing things that you love and really just enjoy your time as a couple. It's so easy to put everything on the back burner when you're dealing with infertility and for it to consume you. Although you won't go a day without thinking about it, you can at least have some fab fun-filled days doing some great things with the man you love. Not only does it make the time go quicker, but it brings you even closer together at the time when it is more important than ever.

With regards to talk of babies etc, I'm afraid to say that at the beginning of all this I could be around babies fairly reasonably but by now I just avoid them at all costs. I've turned down invitations and have left rooms when people with babies enter, have avoided talking about babies with colleagues, have temporarily hidden friends with children from my Facebook feed as I was sick of being greeted with lovely, smiling babies every time I logged on. Makes me feel awful and horrible, but it has helped me cope better I think.

Best of luck to you x

---

Update from me is (to cut a long story short) I'm on the waiting list for an egg donor. We're going to have a fresh egg donor and a fresh sperm donor combined to produce a fresh embryo and have this transferred. Wait will be about 3 to 6 months. So excited to have another bash at trying to conceive, even though it's not the way we ever thought it would be.

 

[theclarks8687]

I agree, baby events are not good for me to handle, I have a hard time seeing a baby in public let alone being cooped up with one. My nephews first birthday was right after my first miscarriage and I had to walk away because I just started balling because I couldn't handle all the toddlers, infants, and pregnant women there, was nothing against any of them, it was just emotionally too hard, now I just avoid it at all cost, including his second birthday this last June.

 

[theclarks8687]

That is exciting silver bell, we are considering other options now and honestly I don't even know if ivc would even help at this point because even though it took a yr, I still got pregnant with donor sperm, but I don't even know if it would stick, I'm going to have to set up an appointment soon and try to see if we can start running test and what not.

 

[LouisaAce]

My younger sister had twins this evening. I feel so immensely guilty for being so sad about it. I don't want to rain on her parade and I'm genuinely happy for her, but I just feel so empty otherwise, especially as we still have no idea when we'll be able to start IVF. An I being super selfish?

 

[silverbell]

Absolutely not, Louisa.

After almost 3 and a half years of TTC (the last 2 and a half knowing what we were dealing with), I'm afraid I have a range of emotions from jealousy and anger to sadness and hopelessness on a fairly daily basis.

I'm now even jealous of ladies who have TTC for years who have gotten success.

I read about people in magazines who TTC for ages and then 'suddenly' got pregnant and it was a miracle and I have to be honest but I get so angry and envious and want to screw the magazine up lol.

I've hidden all my friends who have babies/children from my FB newsfeed as it was breaking my heart seeing happy families.

Infertility is horrendous to go through but when it's something as severe as Klinefelter's it really does go up another level in my opinion. The injustice is sometimes unbearable.

Thinking of you and don't feel bad about your feelings - you're only human and you're going through a heck of a lot. xx

 

[LouisaAce]

Thanks Silverbell.
It feels like a conspiracy when TTC, there's pregnant ladies and nappy commercials and happy families EVERYWHERE, but I had to laugh at this one..... (Maybe to keep from crying?!)
The night after she had the twins I went to an adult shop (long story, looking for a tiara for a Halloween costume) and obviously I was still feeling quite down). So I wandered around for awhile and then realised that the lady behind the counter was at least eight months pregnant, and it was just like "seriously universe?" Kick me while I'm down

 

[silverbell]

Hello ladies.

I hope you are all doing OK.

I'm thrilled beyond words to say that our first fresh donor embryo transfer worked. I got my first ever positive pregnancy test on Wednesday and we are just flabbergasted

I know it's very early days, but just to get pregnant is honestly something we never thought we'd experience and we feel so very grateful and so lucky.

Would also like to say that even though I saw LTTTC ladies get their BFPs I had honestly still convinced myself it would never happen for me ... yet here I am. Keep the faith!

Praying you all get your BFPs soon xxx

 

[clarkea]

Aww well done silverbell. Many congratulations to u both.
We have had our transfer of our 1 and only embryo and we are due to test on tuesday.
Congratulations again xx

 

[silverbell]

Aww well done silverbell. Many congratulations to u both.
We have had our transfer of our 1 and only embryo and we are due to test on tuesday.
Congratulations again xx

clarkea how exciting! I do so hope and pray that your test day on Tuesday brings you your long-awaited



It only takes 1 and clearly that one's a little fighter.

Good luck and thinking of you xxxx

 

[clarkea]

Thanks silverbell. Xx

 

[clarkea]

Bfn :,(
Thinking we might have to do donar sperm. X

 

[silverbell]

Bfn :,(
Thinking we might have to do donar sperm. X

I am so sorry, clarkea I had really hoped you'd get your lucky break.

Will you be having a follow-up appointment with your clinic to discuss things? They can discuss donor sperm with you further then.

It certainly sounds as though you have lots of eggs and there's no reason why the quality of them should be questioned, so it may well be that the sperm needs to be of better quality to produce healthier embies and fertilise more eggs.

It's a very personal decision and of course one that requires much discussion between the 2 of you.

Thinking of you and so sad to hear your news. Look after yourself xxx

 

[clarkea]

Hi silverbell.
Donor sperm was always a possible option as u know klienfelters sperm.
We thought because we are wanting/needing a baby as soon as we would try donor sperm. We have had a long long talk and my husband is happy as he diesnt want to try his sperm again for it not to work coz its xxy sperm.
We thought that if we try donor sperm on our nhs 2cycle. When we go for our 3rd (hopefully) go we would pay for another sperm retrieval and have a go again.
We are so desperate for a family donor sperm sounds like the way to go.
R u living in the uk? Im curios to know how the donor sperm list works??

 

[silverbell]

Hi silverbell.
Donor sperm was always a possible option as u know klienfelters sperm.
We thought because we are wanting/needing a baby as soon as we would try donor sperm. We have had a long long talk and my husband is happy as he diesnt want to try his sperm again for it not to work coz its xxy sperm.
We thought that if we try donor sperm on our nhs 2cycle. When we go for our 3rd (hopefully) go we would pay for another sperm retrieval and have a go again.
We are so desperate for a family donor sperm sounds like the way to go.
R u living in the uk? Im curios to know how the donor sperm list works??

I am in the UK, clarkea, and I will PM you now xxx

 

[lashea110525]

My husband and I have been TTC for 2 years now. I was married before and have a daughter from my first marriage. My husband has no biological children and after being married a year we decided we would try. After a year of having any success my ob told me that since my husband doesn't have any children that she would suggest for him to have a semen analysis done. To make a long story short after 3 semen test all came back with no sperm. My ob and my husbands urologist decided we needed to see fertility specialist. She thought right away it could be a genetic disorder and after doing some blood work we got the sad news he has Klinefelters syndrome. We have options but we are just unsure which to do.
Option 1. IVF To be able to do that they would have to start me on medication. Then my husband would have to be put to sleep to see if they can find live sperm in his testicles. Our doctor said it would be a very low percentage to find live sperm. So if they don't my husband will have to go through more traumatic news and have the actual scar to prove it. If it does work though we have a high chance that our child would have infertile issues as well. Then to top it off it's around $20 to $30 thousand!!
Option 2. Donor sperm. When I first heard of this I was, not going to lie, mortified. I had this horrible stigma on it. My doctor sat down and explained it to me and honestly I was very much relived. It kinda gave me a glimmer hope. She informed us that they can even match a donor that resembles your partner so the baby will favor him. To me that's just crazy insane, in a good way of course. The cost of that is around $800 which compared to $30,000 is just so much more appealing to me. Now, I'm all for this option, but my husband isn't quiet on board yet. I totally understand it. The dr told us it usually takes men up to 6 months to process the shock and fully come to term that a donor may be the best option.
Option 3 Adoption. Which I really think we can all agree is a great option. Honestly though Option 3 would be my last option if I had to choose. I want to experience a pregnancy with my husband. I want to go to all the appointments together, see and feel the baby move, I want to be able to nurse a child. So if anyone has any insight on this I would greatly appreciate it. Thank you so much!!!

 

[silverbell]

Hi lashea

I'm so sorry you find yourself here. It's a horrifying diagnosis to receive for both involved and really is severe infertility when zero sperm are found in the SA.

I would just say that you need to do what's right for you both. It sounds like you've only just found out about the Klinefelter's, so it makes sense for your DH not to be on board with donor sperm just yet as he needs to process the fact that he has a genetic condition and more than likely cannot ever father a child.

My DH underwent microTESE under a general where they cut open the testicle and search for sperm. The Consultant gave him a 5% chance of success and this percentage was based on the numbers of patients he'd done this procedure on who had Klinefelter's Syndrome. Sadly more often than not a man with Klinefelter's Syndrome will not be producing and has never produced sperm and my husband was one of them (but do bear in mind that there is sometimes success with this procedure too).

Adoption was the last option for us too. It's not a quick or straightforward process in the UK at all and this has put us off. I don't think there's anything wrong with wanting to experience pregnancy and the appointments and scans and birth together.

Sadly although I got pregnant using both donor sperm and donor eggs late last year I miscarried and have had 2 BFN FETs since and used up our frosties now. We're currently having to make the heartbreaking decision about whether to continue using donor embryos or just go with adoption and put our dreams about me being pregnant to bed forever.

Give it time and your course of action should become clear to you both. Wishing you both lots of luck and best wishes.