Anyone with experience of Congenital Megaprepuce?

[thekidsarealright]

Bit of a long shot but just thought I'd ask....

DS 13 months has been diagnosed with this as of yesterday and is now on a short waiting list to have it "corrected." Previously, he was diagnosed with buried penis.

The appearance currently isn't great, his penis looks like a button and the area around is pudgy. He often swells up with urine (by which i mean the skin around the whole shaft not just the tip as is fairly common in boys his age) and we have to manipulate the area to extract the urine so we do understand this op is unavoidable for him to be able to urinate properly as an adult and be able to have sex.

What we are concerned about (other than him having to have surgery obv) is the cosmetic appearance afterwards. The small about of info we have seen on line doesn't reassure us and the "end result" picture looks pretty unsightly 18 months post op. Obviously we're not worried about it but are concerned that as he gets older he might develop anxiety about it which may cause issues. We're also concerned that he might get teased by others (boys in the locker room sort of thing) and the affect that can have.

I'm not holding out much hope for any responses, we were told yesterday that it's a fairly new phenomenon only being diagnosed in the last 10 years, beforehand it was being treated as a straightforward circumcision.

Would very much appreciate anyone's experience or thoughts.

Thank you!

[Lougle]

I don't have any experience, sorry.

I would have thought, though, that the earlier surgery is done, the more time the well be for scarring to fade,etc.

[gordonpym]

I know a little boy who is 4 who had the same surgery 3 years ago. His case was even more dramatic as his penis would inflate every time he needed to pee and somebody had to "manipulate" it to free the urine. He had recurrent infections.
I have seen him at the beach, and although his penis was small, there were lots of children running around with "short " penis.
Don't worry too much now for what will happen in the lockers in 10 years time. There are tons of ways to build up confidence. Both mentally and physically (martial art, capoeira, kick-boxing, ....).

[chamomile1981]

Hi there OP,

Just wondering how you got on with the surgery? As this is a very rare condition, Im interested to get your thoughts. My 8 month has been diagnosed and is awaiting surgery too.

Any feedback would be greatly appreciated!!!!!!!

Thanks, A concerned mama

[3boysplusme]

My DS has had this surgery and now looks entirely normal- feel free to contact me and I'll pass on details of his surgeon. It's a rare condition so only have the best deal with it. We had it treated at the Royal Cronwell hospital in London. Best money ever spent.

[Sammymo88]

Hi my son had the above operation in June 2014
We have been back to the hospital today for a check up and have been told he needs a further operation to "tidy it up" . I wasn't happy with this phrase as my sons genitalia is not a haircut !
The consultant at Manchester children's hospital is arrogant and couldn't really explain why my sons penis looked as bad as it did six months down the line! The only way I can describe it is looking like a mushroom with bits of lumpy skin hanging off it looks horrendous!
I'm not sure if this is standard procedure or shall I see a solicitor and start legal proceedings as I've read elsewhere that megaprepuce should only be the one operation ?

[Joyfulnana]

Hi could you let me know the name of the surgeon please? My little grandson is due to have this surgery as an nhs patient but we are keen to explore all options for him.

[Jojojayjay]

Hello to you all who’ve posted about congenital mega prepuce.
My son was due to have the surgery on the 18/12/2017
He is 16 months old.
We walked away from the hospital that very morning avoiding the “modified circumcision” mainly because the urologist, although amazing was talking about the procedure being “cosmetic” surgery and not medically necessary.
My son has never had any problems with infection or discomfort. He does have redundant skin but we doubt it was absolutely necessary to remove. I’m looking for some advise please from anyone who avoided the surgery and the condition corrected itself???
Thank you

[Mummaofboys2020]

Hi all, I no this isn’t a popular thread but I’m going to give it a go anyway. My son has been diagnosed with megaprepuce he’s 18m and was born with it. He has no symptoms therefore his pediatrition wants to leave him be. From the info I’ve found about this condition they don’t grow out of it and this is what she’s telling me will happen with some steroid cream, I’m not convinced at all therefore seeking more advice 🤞. I want the surgery done on him ASAP. Any info you guys have would be really appreciated.

Thank you x

[everia84]

Hello,
My 5 year old is going to have surgery to correct megaprepuce soon. We have been on the waiting list and had delays due to the pandemic. Has anyone’s sons had surgery at this age? Just wondering whether he will definitely need a catheter, and does the surgery also last 3hrs ? Many thanks in advance x

[Mummaofboys2020]

Hey, I wrote on here previous asking about this condition as my little boy has it. I can’t give you any info about surgery I’m sorry however could you give me some info? How did you manage to toilet train him? And also where abouts are you having the op done? My son has just been referred to great ormand street. Thanks in advance any info would be fabulous x