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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Help re son's future fertility - undescended testicles

4 replies

drinkingteaslowly · 09/10/2023 19:00

Hi there, I wasn't sure where to post this put perhaps someone has some insight here, either from a medical or personal perspective.. I would really appreciate any thoughts and also apologise if this is an insensitive place to post. I will remove if so.

My 18 month old son was premature and has undescended testicles. One might be retractile, so there sometimes. This was flagged over a year ago and we're waiting for surgery.. been told 6-12 month wait from now.
Everything I read, including NHS guidance and research papers, suggests this is a really time sensitive issue in terms of fertility and testicular health, with best outcomes for both these if surgery is between 6 and 12 months of age. Obviously we're way past that and he might even be 2.5 by the time surgery is available due to NHS waiting times.

Consultant has tentatively predicted son's fertility will be about half that of a typical man and won't discuss benefits of having surgery in terms of fertility except to say the difference won't be significant. However everything I read says otherwise! I don't know what to do.. private surgery is really expensive and would mean some sacrifices for us. I have no idea if statistically it's worth it. However, I really want to preserve his future fertility as much as possible for all the obvious reasons.

I'm thinking that on this board someone might have some experience of this as an adult, so might have some advice etc on outcomes? If so I'd so very appreciate hearing from you. Many thanks!

OP posts:
Goingcrazy23 · 09/10/2023 22:08

Hi, unfortunately I don’t have a good outcome. My husband had undescended testicles, these however were not operated on until he was 9 so well past the recommended age. Unfortunately as a result he is azospermatic so produces no sperm, and we were given very low chances of being able to retrieve any sperm via a biopsy so instead opted for a doner route to start a family. All I can say is keep pushing the Drs, my husbands GP was shocked when his sperm test came back as 0. I don’t think all GPS really realise the impact on fertility- from my research though the sooner the operation happens the better and I did read about successful outcomes for others, so it isn’t a forgone conclusion. If you search fertility friends website forum, although quiet there is a whole thread about the condition.

is it both or just one testicle? Being open with him in future about the health condition I feel is also important- for my husband it helped that he knew before we TTC as we didn’t face the monthly heartbreak.

wishing you all the best x

drinkingteaslowly · 10/10/2023 13:12

Thank you so much for your honest and thoughtful response. It's both testicles and so frustrating because all the literature says surgery at 12 months is optimum for a good outcome with an 18 month cut off. And yet these guidelines are seemingly rarely adhered to, certainly not in my son's case although we've known about the issue for over a year. In that time we've seen a consultant three times and the only time fertility was mentioned was as an afterthought almost, during our most recent appt. It's really not taken seriously enough. I'm kicking myself for not researching more thoroughly earlier.

I'll definitely search the fertility friends website forum, thank you for the recommend.

I agree it's something to be open about and I'm glad at least that you and your husband had some emotional preparation. I wish you the very best of luck with the donor route xx

OP posts:
Holskey · 11/10/2023 00:20

I have 0 experience of this particular issue, but I have over 10 years' experience of infertility, at the end of which I had a son.

In your shoes, if it were at all financially possible, I would book a private appointment immediately. It sounds like the NHS is letting your boy down. Sorry you're in this position x

drinkingteaslowly · 11/10/2023 21:32

Thank you for your insight. That sounds like a gruelling journey and I'm so glad you had a son at the end of it. We have just been given some hope that the surgery will be moved forward on the NHS but if it doesn't work out we will definitely be looking into a private appt asap. Thanks again x

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