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!

[Theas18]

Why does he need an op, what are the risks of not doing it? have they told you? Ballooning foreskins in small boys are pretty normal as are long loose foreskins. Neither are treated surgically in most cases in the UK.

Are you in the UK?

If they haven't talked through all the details of the procedure post op recover and cosmetic appearances they haven't counselled you very well.Ask more questions, in a letter if needed.

[bundaberg]

not had direct experience of this, but know there are people on here who have

personally i would research this to death! is there a chance it will correct itself? if not what are the "risks" of leaving it uncorrected?
are there benefits of having it done early?
what does the op involve and what are the potential complications?

are there different options on the operation?

if you can';t find much out online then get a third or fourth or fifth opinion... keep asking questions until you find someone who can answer them for you..

[bundaberg]

this is interesting

it sounds like what they want to do is a circumcision. what you need to know is what type.

[zigzag1977]

Hi guys,

Thank you for the e-mails! Trust me, I have done all the research I could on the subject despite the lack of information on the net, and asked the 2 consultants I saw all the above questions! They both agreed that it won't correct itself, but will likely get worse, that this is the optimum age to do it, and that risks are small all things considered, with the eventual appearance being that of a circumcised penis. Circumcision was what they used to do to treat the condition up until 15 years ago, when they realized that it was causing more damage than good, and they changed the procedure to a more 'specific' op..

The surgeons I saw are two prominent pediatric urologists, both practicing at Great Ormond Street and the Portland in London (where we are going)..

But while they answered all my questions, I guess I just wanted an actual opinion from a non-medical parent whose child had the op.. Basically a 'real' account of how it went, how it was afterwards etc..

Just to clarify, this isn't 'ballooning' (phimosis) per se - ballooning only affects the penile area and is in most cases solved through some steroid cream being applied.. This causes the ballooning of the whole scrotum area and the only way to correct it is (according to the two specialists and all the info I could locate online) surgery :( It's quite a rare condition, hence the lack of info or real witness accounts on the net..

So I was hoping someone here might also have had their son have this and could share their experience..

Thanks in advance to all :)

[bundaberg]

it sounds like you're in good hands then.

keep this thread bumped up so plenty of people see it maybe? have you also looked on facebook? i wonder if there are any support groups on there for people with this, and similar issues?

[zigzag1977]

Thank you bundaberg - I will try facebook (hadn't thought of that!) and will keep bumping this up! Thanks for the advice again :)

[CrewElla]

OP did your son ever have the surgery? My son is scheduled for it and I am scared. Thanks.

[jayandmaan]

hi zigzag1977, how was the OP of your son?
My son will be having his surgery this September and i am too scared.Please give me an idea and some advice how did you cope with this situation.Your reply is very much really appreciated.
Thanks so much in advance.

[DeadCert]

Just to add my support, my son is 18 months post op. Feel free to ask any questions.

[adawber1507]

Hi
My son has had the operation, he only had it when he was 2 as nobody could seem to diagnose him until we finally got referred to Manchester Childrens Hospital!
The operation went very smoothly, it looked very sore when he first came home but after a day or 2 he didn't really have any pain and it healed very quickly.
He had the operation because he was in a lot of discomfort and when he was a baby he was screaming every time he needed a wee and we had to open his nappy and squeeze the balloon for him to wee, this was happening in the middle of the night too!
Since the operation he has had no discomfort, I must admit it does look a little odd but each child is different they told us before he had the operation that they couldn't guarantee what it would look like afterwards they would just try their best to make it look normal.
He just had one check up after the operation and was discharged and we haven't had to go back with any issues since.
Hope this helps a little x

[Loulou3535]

Hi my 6month old son has just been diagnosed with this megaprepuce (even thou he's not had it since birth) and only started in the last month? Does it def have to have surgery or can they just make the opening for urine to escape bigger!? How do they know baby will not grow into the megaprepuce?
Any info appreciated?

[Mitchelldad]

Hi everyone. I've joined today just to post to this thread and share my experience, as a parent who has been through this with my son.

Our son was diagnosed with mega prepuce at around 9months. The consultant said it needed to be operated on.

I'm not one for taking a laymans view and arguing over the validity of the operation, as some posts on here. The expert said it needed doing,- it would be naive, bordering on stupid to think that uninformed opinions know better. He's paid to make those calls, so I trusted him. Doesn't mean I wasn't looking loads up on the web and worrying about my son having the operation though....

Anyway, to cut a long story short. He had the op about a month ago. It is a modified circumcision procedure. Operation was less than an hour and he came home after he had wee'd. He had a catheter tube left in after the op, and was heavily bandaged around the whole area.

We were asked to double nappy him for a week to keep the poo away from the wound, and the catheter.

After a week we went back to have the bandages removed. As a man, all I can say is I sympathise with the little man. Ouch.- it looked painful!

Very red.

But, he wasn't in any pain with it during the week after the op (was on painkillers, antibiotics and a few other things). All was ok.- apart from he was obviously conscious of it and wouldnt let is touch it to clean it. That i can understand,- it shaft is very very sensitive under the skin.... But then, I guess, we all know that, don't we?!!

A month down the line and everything is absolutely hunky dory. No pain, no swelling, no issues. Yes, it looks like a circumscion, and takes some getting used to, when you're not used to seeing them.. I don't regret the operation for one second though,- he needed it, and is fit and well now

[donnacampbell85]

Hi,
My son is 8months old and getting this operation on Thursday.
I am extremely nervous and anxious that something will go wrong. I'm mainly worried about the after care and the cosmetic look of my sons penis following the operation. How long does it take to heal? Does it look like a circumcised penis?
Any help would be appreciated? There is nothing online and the pictures you do find are horrific.
Maybe not allowed but does anyone have pics post op so I can prepare. Ok if not but advice on the above would be great. Xx

[Soccernet12]

Hi my son is having the same opp in two weeks he is nine months old I am so worried about him going under and also what it will look like in years to come thinking of him in school showers ( I know if he is ok I should no care but so much going through my head )the doc has said it should look normal but if he needs any cosmetic surgery they can do that in about two years but I was just wondering if anyone could tell me what it looks like after the opp thanks it would put my mind a little at rest

[king1971]

Hi
My son was diagnosed with this condition and we experienced all the symptons as descibed by zigzak in the thread above. We live in Dubai and several doctors told us it was phimosis and he needed a circumcision. We tried the steriod cream withiut any improvement. I was not convinced with this advice and my own research led me to conclude it was mega prepuce which transpires to be a rare congenital condition. The same diagnosis was then made by a senior pediatric uroligist from manchester childrens hospital who concluded the same from photos and my description. Apparently the hospital sees a handful of cases every year but it is a condition that is becoming more common with the reasons for such being unkown.

The condition does not correct itself and we were left with the dilema of to leave it and see how it goes or go with the op. We had to go with the op beceause the symptons are scary particularly when the scrotum baloons to the size of a lemon every time your child needs to urinate.......and needs assistance voiding the urine. It looked very disturbing and uncomfortable and we were worried about longer term damage.

Its also very important to know that a circumcision is not the answer to correcting this condition and is in fact contradicted and should be avoided. This is something to do with the outer foreskin which is used in the megaprepuce operation being required to allow frowth of the penis in the future. If a dr tells you he needs a circumcision to correct the condition then find another dr!!!!

The operation was done at 6 months old and took about 1 hour. He went home the same day with bandaging and a catheta tube which was removed about a week later. He seemed to be in no discomfort during this time and it took a further couple of months before it didnt appear sore.

Appearance now is that of a cicumcised penis. However, it still looks a little buried but I was told by the dr that by the time he reaches puberty it will look normal. We were very worried about the final result aesthetically but as far as we were concerned there was no option but to take the op. I believe visually the result is that of a circumcised and that a much better end result than what he was experiencing as a consequence of the condition. A big part of making the right decision is finding the right dr. A specialist pediatric uroligist is the specialism dealing with this condition.

Hope this helps.

[Rolphie182]

Hi all my 29 week old goes into tomorrow morning for his op ???? but we know it's for the best.. It is all very overwhelming because of the little info about this but have every bit of faith in the surgeon ????

[gordonpym]

Hi Rolphie, my friend's son had the operation a couple of years ago, and not only did it went absolutely fine, it was life-changing for the whole family. The parents and staff at the nursery has to squeeze the penis to release the urine trapped in the ballon. And of course, the little boy was going from one UTI to the other. So a lot of pain and discomfort.

[Rolphie182]

Ty gordonpym for your reply, it's very much the same here having to squeeze it every time he needs to wee and the size it gets to is scary...every night I go to bed wondering if it will burst but it will soon be over.

[gordonpym]

Fingers crossed for your operation!!

[Rolphie182]

My little boy is home and very well, completely oblivious to everything..surgery was a success straightforward and everything is great..he does have a catheter in so is not only on lots of pain relief but antibiotics and an anti spasmodic drug..catheter is in for a week and bandaged up for a week as well..all in all we are very happy

[gordonpym]

Fantastic news!

[Helen6288]

Hello,

My son also had this operation on 29th, I honestly can not get over how happy and that he is not bothered by what's happened so far. He too has a catheter in, so is on a few different drugs, but so far so good. Has been so hard to find much information on this online! So far though, we feel we have made the right decision, just to see the results next week when the dressing is removed and how it recovers over time!!

[Pomphrey44]

Hi all

My DS has been diagnosed with this today and is now on the waiting list to have surgery. Rolphie and Helen so pleased I hear the surgery went well, please can you let me know what the after effects were? We're your lo's in any pain and what does the penis look like now? Where did you have the procedure done also? I don't know anything about the surgeon who is performing our DS's surgery other than he has done this op a handful of times, with a successful outcome he said, and has been in this field for 20 years.

I'm so worried my DS will have an unusual penis so any feedback would be greatly appreciated.

[Jojojayjay]

Hello, did your son end up having the surgery??
We’re on the way to the hospital now for my son to have his. I’m not sure if it is absolutely necessary? Scared for him

[Jojojayjay]

Hello I am looking for some advice please, my sons been diagnosed with CM too and is having surgery this morning.
Was your son in pain/discomfort from the condition? My sons seems to be getting better. He’s never been in any discomfort from it at all. If you have time please reply xxxx