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anyone got a toddler with both testicles undescended or missing altogether?!
DS1 had one undescended testicle. This is 4 years ago, so I am quite likely to get some of the details wrong, particularly as I'd just had DS2 when it all happened.
The surgeon looked at him first and referred us for a scan (I think). The guy who did that was brilliant and said it might be missing and that meant something. Sorry, very vague - I know - my knowledge of biology is none-existent and I was sleep deprived, too.
Anyhow, in DS's case, he found the testicle and we went onto have the op as it wasn't coming down on its own. 9 months later, we went private for this. I remember sitting with the consultant on the morning and him telling me the sooner the better . The testicle was very undeveloped and is still smaller today, but DS likes it all the same .
Sorry no knowledge as to hormonal treatment
My dc was dx with both undecended at birth, they operated when he was 23 months on one side, the other one with manipulation would come come (surgeon said it was shy !) Consultant was reluctant to operate on both at the same time. The untreated side has now decended naturally. Was told they like to operate sooner rather than later due to possible complications (twisting .. ouch) Only other thing to mention is statistically theres a marginally higher risk of testical cancer so to make sure when he's older he checks himself regularly.
Strangely both my dh and his dad had similar conditions (so obviously no link with loss of fertility!)
Operation was very quick and very routine, and ds was up and running about within a few hours
Hope this helps and I haven't scared you (its worrying at the time but he's 5 now and its a very distant memory
I have a friend with a DS, just 3. He has no testicles in his scrotum and only one poorly developed one up near his stomach. He has had scans and keyhole sugery to investigate. He is now under a bigwig consultant in Manchester and the decision has been whether to attempt to move it, considering the blood supply was vary dodgy or to leave it be.
Leaving it alone will allow him to release testosterone to go through puberty and maintain secondary sexual characterisitcs i.e. be a man but he will never produce sperm. Moving it could leave him with nothing, not even the hormone potential and maybe no sperm. He would then have to have hormone replacement which is not very good for men at the moment.
So, this has obviously been incredibly traumatic and they have decided to leave the testicle where it is. And face infertility. But when you consider the IVF progress that has been made in the last 30 years, I think they are optimistic that the door may not be shut. I heard on the radio a few months ago that sperm has been generated from bone marrow cells!
That is their story but it is apparently incredibly rare and they were very surprised it wasn't a more simple case of undescended testicles. This can be resolved much more easily. Good luck!
snuffy, thats really interesting that you say that your friends little boy could still gain manly characteristcis without his testicles.this is what i worried about if they arent there.
the consultant at the hospital i think initially thought because of the damage to the pituarity and his other hormone probs that he could have had the hormone prob where youre born boy/girl but not knowing which one! as ds is very dainty and the lack of testicles, but he has a normal looking willy so apparently thats good, phew.
the hormone treatment is definitely causes changes "down there", but no signs of testicles, it just seems to have made his ball bag a bit swollen. sorry too much info.