My son's been diagnosed with Congenital Megaprepuce (& Buried Penis) - any parents been in my shoes??! - Mothering Forums

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#1 of 12 Old 11-03-2013, 12:56 AM - Thread Starter
 
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Hi all,

 

Im new to this forum, but I am desperately trying to learn more about this extremely rare condition. 

 

My son is 8 months and has finally been diagnosed with Congenital Megaprepuce (after months on a waiting list to see specialist). 

 

We have another appt this week to see a Urologist about surgery, but I really want to know if there is anyone out there that has experience with this that chose NOT to have surgery. 

 

Every time he urinates his entire scrotum area (he has a buried penis also) swells to the size of a tennis ball and it turns purple as the skin is stretched so tight. I have to manipulate his penis to get the urine to pass. I have to do this every time I change his nappy, as the urine never comes out by itself. He's not in any pain with it. 

 

Is there anyone here that has dealt with this situation?! What did you do? Did you have surgery or wait? What were the outcomes? 

 

I cant find much at all on Google, as I mentioned above, its a very rare condition. 

 

Any information would be greatly appreciated, as Im a very concerned mama!!!!! 

 

Thanks in advance.G

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#2 of 12 Old 11-04-2013, 01:31 PM
 
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I'm sorry your son's condition is causing you concern. My son does not have this but he does have another condition called hypospadias that affects how the penis looks and functions. We saw a pediatric urologist and he gave us some useful information to consider. A penis should allow a man to urinate standing up at a urinal. And he should be able to ejaculate so that the sperm travels to the right place, so there isn't retrograde ejaculation. We could choose not to operate, but then we would need to think about how we would explain our decision to our son. I imagine this would also be something that would be a conversation with each new sexual partner he has in the future. We would also have to teach him how to properly care for his penis. These are things to consider as you make your decision. I hope you get some good information and answers when you see the urologist.


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#3 of 12 Old 11-06-2013, 07:34 PM
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Below is a link to a published article on Congenital megaprepuce in the British Journal of Urology International. Please read and share with the doctor. I'm not a doctor but I have read in numerous places that a buried penis is an adverse side effect of amputating the prepuce of an infant's penis (circumcision). So your son can't be diagnosed with both a megaprepuce AND a buried penis. The conclusion of the article states: "Congenital megaprepuce is a striking condition which cannot be easily missed or hidden; we propose that it is a newly emerging and distinct condition which should not be confused with a buried, concealed, webbed, trapped or micropenis. Early surgical correction is recommended and circumcision should be avoided."  Best regards.

 

http://onlinelibrary.wiley.com/doi/10.1046/j.1464-410X.2000.00509.x/abstract;jsessionid=A53594A2D4850009CF887BE28D85B95C.f04t02

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#4 of 12 Old 06-14-2014, 07:46 PM
 
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Wow. My son has the exact same thing!! We are awaiting diagnosis but this is exactly his story. He is 1 months. It's so scary! Have you received any helpful advice??
 
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#5 of 12 Old 01-08-2017, 03:06 AM
 
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Quote:
Originally Posted by chamomile1981 View Post
<p>Hi all,</p>
<p> </p>
<p>Im new to this forum, but I am desperately trying to learn more about this extremely rare condition. </p>
<p> </p>
<p>My son is 8 months and has finally been diagnosed with Congenital Megaprepuce (after months on a waiting list to see specialist). </p>
<p> </p>
<p>We have another appt this week to see a Urologist about surgery, but I really want to know if there is anyone out there that has experience with this that chose NOT to have surgery. </p>
<p> </p>
<p>Every time he urinates his entire scrotum area (he has a buried penis also) swells to the size of a tennis ball and it turns purple as the skin is stretched so tight. I have to manipulate his penis to get the urine to pass. I have to do this every time I change his nappy, as the urine never comes out by itself. He's not in any pain with it. </p>
<p> </p>
<p>Is there anyone here that has dealt with this situation?! What did you do? Did you have surgery or wait? What were the outcomes? </p>
<p> </p>
<p>I cant find much at all on Google, as I mentioned above, its a very rare condition. </p>
<p> </p>
<p>Any information would be greatly appreciated, as Im a very concerned mama!!!!! </p>
<p> </p>
<p>Thanks in advance.G</p>
Hello,
My son has also been diagnosed with congenital megaprepuce. The surgery is planned for Thursday but I'd like to know whether there is an alternative to surgery. Has your son done it?
Thanks
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#6 of 12 Old 01-08-2017, 09:32 PM
 
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Quote:
Originally Posted by pokeyac View Post
My son does not have this but he does have another condition called hypospadias that affects how the penis looks and functions. We saw a pediatric urologist and he gave us some useful information to consider. A penis should allow a man to urinate standing up at a urinal. And he should be able to ejaculate so that the sperm travels to the right place, so there isn't retrograde ejaculation. We could choose not to operate, but then we would need to think about how we would explain our decision to our son. I imagine this would also be something that would be a conversation with each new sexual partner he has in the future. We would also have to teach him how to properly care for his penis. These are things to consider as you make your decision. I hope you get some good information and answers when you see the urologist.
The decision to have surgery performed on a infant's genitals is a complex one because its such an incredibly personal area of the body. Ideally it would be best not to perform any kind of surgery until the child is old enough to make those kinds of personal choices for himself. I myself was born with hypospadias, and my doctor told my parents all the same things yours told you.

And he turned out to be wrong. For one I could care less about "standing at a urinal" especially when the scarring from the surgery made me too self conscious to use urinals anyway! Honestly I value FAR MORE keeping the sexually sensitive tissue on my dick for a better sex life, then using it to make a false urethra so I can feel comfortable peeing at a urinal for the first time when I am 10. For one after reviewing my medical files with a Urologist, he felt that my condition was so mild I could have probably been fine without the surgery.

My point is not to judge your decision (as Hypo is an incredibly complicated developmental complication, and the severity your son had could have been far worse than mine, and could have led to real health problems and not just silly quandaries by middle aged male doctors about boys big dreams of peeing at urinals...)

My point is directed to chamomile1981- whatever you do, take the time to separate the actual value of the surgical fix verses the projected value of the doctor. Example- the surgery performed on me left me with painful, embarrassing scarring and a fistula, also resulting in limited sexual sensation ONLY because a doctor theorized that peeing at a urinal is important. While an ACTUAL surgical benefit would be avoiding further health complications. Separate these two sides out, and then when you do, figure out the LEAST invasive way of solving that problem.

Far too often parents just take the word of the doctor and don't take the time to evaluate the situation for themselves. This is VERY personal, and very complicated waters you are entering. Don't blindly trust the imposed values brought to you by any one doctor. Try to solve this with the understanding that you CANNOT know what your son will want, and do the least you possibly could do that allows for a solution to health complications.

Best of luck!
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#7 of 12 Old 01-08-2017, 10:48 PM
 
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I discovered a board for men with hypo a few years ago, the feeling I got from that (it was open for anyone to read, just not reply) was anger. There were many angry men on that board. They were angry that they were not given a choice and angry at the complications they now had. While an infant's surgery may go well and look good to the parent come puberty some men have things go wrong. There was talk of double holes, and long number 8 shaped holes and having to sit anyway. This was because of their infant surgery. So unless your son really needs surgery for a pressing medical reason (I read of one boy who was peeing out of his testicle-that needed to be fixed) I would stay away from surgeons.

To the OP whose son has congenital megaprepuce, I am sorry. I know nothing about that condition but I would read up and study before rushing towards any surgery. The only reason for surgery should be that his health will be compromised if it isn't corrected immediately.

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#8 of 12 Old 01-10-2017, 08:50 AM
 
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Originally Posted by Caro GJ View Post
Hello,
My son has also been diagnosed with congenital megaprepuce. The surgery is planned for Thursday but I'd like to know whether there is an alternative to surgery. Has your son done it?
Thanks
Anything that is "planned" is no emergency.

Leave him alone. Let him decide at an informed age what constitutes too much pleasure-receptive skin.

Ballooning of the foreskin is NORMAL and will happen in phases to every intact child.

Second and probably third opinions are essential before considering elective genital surgery. Make sure the doctor HAS a foreskin. YES ASK.

-Ron
HIS body, HIS decision.
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#9 of 12 Old 01-11-2017, 10:10 AM
 
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One thing that has always struck me about nearly all doctors responses to these types of situations is that they seem to feel compelled to "fix" the problem, be it a real problem or just a perceived problem. Urologists are even worse. Almost never will they advise a parent to leave it be and wait to see how things develop, or wait until the child is old enough to decide for himself. This is even very prevalent in cases where there is no problem such as a tight foreskin, which is perfectly normal, yet so many doctors insist on operating.
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#10 of 12 Old 01-11-2017, 05:48 PM
 
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When it comes to foreskins they seem compelled to either fix or check, they don't have such a fixation on ears or anywhere else it seems. I think they come with a mind set that says 'this is a problem area check'.
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#11 of 12 Old 01-11-2017, 09:56 PM
 
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When it comes to foreskins they seem compelled to either fix or check, they don't have such a fixation on ears or anywhere else it seems. I think they come with a mind set that says 'this is a problem area check'.
And its something they tend to do with boys more so than girls. A prime example of this is that there is equivalent hypospadias developmental disorder that effects baby girls but there ISNT an equivalent surgery to "fix" it. They just let girls be.

Its almost like there is this subconscious theory in western medicine that to be male is to be out of nature, and to be female is to BE nature. And that is why if a boy has a problem, his body must be surgically reconstructed to find a solution, because unlike girls it won't have a natural solution.
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#12 of 12 Old 01-12-2017, 08:32 AM
 
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When it comes to foreskins they seem compelled to either fix or check, they don't have such a fixation on ears or anywhere else it seems. I think they come with a mind set that says 'this is a problem area check'.
I can only surmise that this weird compulsion stems from something that long ago crept into the teaching curriculum in medical school, and those that review such content have failed to notice the absurdity of it and revise what is taught. Only in America!
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