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

 
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#1 of 4 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 4 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 4 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 4 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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