Surgery to correct mega prepuce

[zigzag1977]

Hi everyone, I needed some advice from any mothers out there whose sons have been through the same thing..

My 12-month old son has been diagnosed with congenital mega prepuce (essentually too much skin around his prepuce meaning when he pees it gets 'stuck' in his skin and gives the appearance of a balloon).

It doesn't cause him any discomfort, and I really didn't want him to go through an operation unless he had no choice, not least as it's under general anesthesia, but according to two pediatric urologists, I am told he will need to have this done, which I am gutted and terrified about!

It's quite a rare condition, and I haven't found much on the internet about the surgical procedure to rectify it, post-recovery and cosmetic appearance following this, so I wondered if anyone out there had experience of their child having this procedure and could tell me a little bit about how it went for them?

I appreciate any reply - thanks!

HI everyone

My son (9 months) is now 5 days post op for CMP and is doing well, he’s been today for his bandages and catheter removed

As most of you have put my partner and I researched this to death and with a heavy heart we were told by the dr mr Shenoy paediatric urologist that it wouldn’t rectify itself and should be done sooner rather than later.

It only started when he was 4 months old and we faught for 4 months to get a dianosis having been fobbed off by other medical professionals

We had to press on the bulbous sack to extract the urine and although my son wasn’t it pain he had UTI’s and was uncomfortable especially when very swollen.

The operation at QMC Nottingham went well around 90 mins and once we knew how to blue peter the poo nappy (you have to double nappy) and received his meds (calpol, ibuprofen, anti spasmodic tablets and penicillin) we were able to go home.

Visually after today’s catheter and bandage removal it was better than I thought it would be however it does have a burried penis look to it but hopefully as he grows up he will get more of a shaft.

He’ll be having a 3 month check up next by the surgeon so fingers crossed

If anyone has any questions please give me a shout and whilst I know it’s hard and it was by far the worst day of my life these people know what they are doing and my sons surgeon has also written papers and journals on the condition which was reassuring.

Keep positive people

X

Hello Sarahkate, Thank you so much for your message I am pleased your lb is doing great. My son hasn’t had any problems at all. His scrotum area never swells it’s only the end of his penis. The urologist has suggested the “modified circumcision” was only to remove some redundant skin? He hasn’t got that much. We just felt the surgery was a little invasive if not completely necessary. There’s so many people out there that have experienced what my sons going through and have said how normal it is. Most people on this thread have expressed how ill there little ones were with UTIs etc. We’ve never had any so feel very reluctant to put him through surgery. I suppose Our decision to cancel the surgery may have been a mistake but we’re going to hope that the problem will just improve on its own,??

Hi jojojayjay

Whatever your decision Hun you made it for the right reasons for your son as his parents. I don't think there is a right or wrong answer.

I didn't really want him to have surgery but we couldn't let it carry on like that

Did you cancel on the day he was supposed to have the operation as I think your thread said you were on route to hospital to have it?

X

We cancelled it twice. It was first scheduled the week before his first birthday. My husband had said he though the ballooning was reducing. So we postponed that and had another meeting with the urologist who advised us again to get the surgery. Then the week before xmas on the 18th December was the new date and after talking with the consultant that morning we decided against the surgery. He’d said it was only “cosmetically” necessary. And that we shouldn’t get the surgery until we’re absolutely sure.
Thank you for your reply. It’s been really hard to find anyone with first hand experience x

I know, it's been really tough trying to speak to people and the internet is a bit vague and full of scare mongers too and horrendous pictures.

Well hopefully Hun it will get better as he gets older (fingers crossed)

Did they say it was more penile phimosis than CMP? As I'm sure I read at some point that if it's just the tip then that's what is was. I may be wrong.

So, when is your next appointment with them ? I guess he'll need to see them when he gets a bit older

They didn’t make any more appointments. Just said we should go back if we have any problems.
I really hope he doesn’t get any UTIs etc. And I hope he grows into the redundant skin. Which would be the hopes of the urologist also. Although he felt doubtful of that.
I really feel terrible for wasting the time of these amazing nhs surgeons however it felt totally wrong. He was absolutely certain it wasn’t phimosis.
Xx

You haven't wasted their time hun, you've done what you thought is right so fair play to you.
fingers crossed for you all and I hope it gets better I really do..

Here if you need anything xx take care

Thank you so much, I hope your little one continues to heal with no further complications. Xx

Unfortunately this was not picked up on with my boy, despite an operation for a hernia in his groin at four months old. He is going to have the op for megaprepuce correction at almost 8 years old! I am so scared of how painful it will be for him, he is already worrying too and we haven't even had the surgery date through yet.

Hi from Argentina!
My 1 1/2 year old child is having the op next week.
I wanted to ask you (due there's not a lot of info in the internet) how did the op came out with your children. Does it look ok now that they're older? What special cares did you take with him? Did they go to kínder at that age?
Thank you!

Hi everybody. My little boy is 21 months old and had his megaprepuce operation just before Christmas when he was 18 months.

The operation went really smoothly and the surgeon was pleased with the results. My LO used to balloon terribly and we used to have to help him wee. It was much worse too in a car seat or pushchair, he would cry his eyes out until we had helped to relieve the pressure.

He had a children's version of an epidural during his operation, he was very upset and groggy when he first woke but once he had eaten and drank we were allowed home the same day. He slept through the first night (he was pain free with his epidural!) and we gave him paracetamol/ibuprofen every 4 hours if we thought he was uncomfortable. Honestly he was an absolute trooper and went about his day as normal. We used loose nappies and fleece liners and gave him regular baths to clean the area. It was obviously uncomfortable for him as whenever we changed him he would wimper a bit but only for a week or so.

Now 4 months down the line he is our perfect little boy who no longer needs our help to wee and is no longer in pain or discomfort. It was a great decision and outcome for us but he really was suffering with it.

It isn't without side effects as he now has additional skin around the rim of his penis, the surgeon said that this might happen and that he might need a follow up surgery. I am hoping that he will grow out of it so no need for more surgery. My husband is worried it looks a bit different but plenty more growing to do yet and the most important thing is that he's no longer in pain!

Also our first follow up appointment is not for 6 months so if you're worried about redness/infection I would suggest seeing your GP!

All in all we're pleased it's now done as it was when one of the hardest days ever!!

Zigzag1977
What happened? Did your son have the surgery? Or did you leave it? Has it got any better???

Hi mums! I've read your messages and too struggle to find anything online.

My son 10m has had his corrected with surgery a few weeks ago. I'm really in desperate need to speak to others who have gone through the same process and if you have had any complications after surgery? We are in Australia and very limited help and knowledge. My son was 9 months when he had his surgery which was successful of the correction of megaprepuce which he has healed from just a couple stitches remain but I now have lots of other concerns.

I hope to hear from someone from this site, as said previously it's rare. I'm feeling very overwhelmed and the little help we get isnt reassuring.

Thank you xx

Hi, thank you for sharing your stories. My son has just had the operation and he is very well after it. Please can anyone update their posts on what has happened years on, about the appearance and function?

Hello my son is now 7 and all is normal! No problems at all hope that helps

Thank you jojojaynay this is very reassuring. I have been so worried about the end result, in particular the appearance. He is 2 days post op today and every is working fine and he is still able to crawl.

Hello,

Hoping you might still see this, my son had this when he was two, he’s now 9. His penis looks really shrunken and I’m concerned, I don’t want it to stay this way. Not sure if it’s grown at all, first child and only boy in our family.

Did your sons still appear shrunken at 9.

Thank you

Hi Shrimp11
my son is now 7.1/2 and all is perfectly normal. No issues at all urinating and the appearance is just a circumcised penis. I really hope your sons is ok 🙏🏻 maybe consult a urologist? Good luck

Hi, please can you describe how it was after the operation. My now 1 year old is 4 months post op and the appearance is still that of a little thumb nail and as described by Shrimp11 it appears sunken. Thanks

Littlelocket, absolutely no issues at all, we had concerns immediately after surgery as he was healing it looked awful 😞 but nothing at all out of the ordinary since!
did your son have a modified circumcision? For congenital mega prepuce ?

Yes he had a modifiedcircumcision for congenital mega prepuce. The only way I can describe the appearance now is that he has excess pubic fat, which I’m told he will grown into. The penis head is only visible and the length of the penis is buried in the pubic fat. Is this the same as your sons?

Hi
My son had the op when he was 2 and I was worried about the appearance as it still looked as you have described above several years later, it only started to look more normal when he was around 11-12. He's 14 now and has no issues. Hope this helps.

Thank you for all of your responses. I think I will book in with the GP just to make sure, but your messages are hopeful.

Thank you

Yes, this is exactly what my sons looks like. I hope it doesn’t remain that way for his sake.

Hi all.

Hoping this thread is still picked up as there is nothing out there about this condition!!

My boy had his operation in 2016 at 10 months and is now nearly 10. And if anyone sees this it would be great to talk.

xx