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Original poster

Boys with hypospadias

42 replies

minimuffin · 04/04/2007 20:06

I've checked previous threads on this and there are only a couple of fairly old ones although they're really useful.

My ds is 15 months old and has "fairly severe" (in the words of our consultant) hypospadias. We've been told it'll take at least 2 or 3 ops to correct. Have managed to put the issue on the back burner more or less since he was born, and not fret about it, but feel like it's time to start addressing it now.

Was wondering if anyone else has a son with this condition and wanted to talk about it. There is so little info about it - consultant told us not to bother reading what there is on the net as he said it makes it all sound far worse than it is and is fairly upbeat that he can sort ds out so that he will look and feel completely normal.

We've been advised to wait until he is 3 before the first op. I'm interested to know from parents who've been through the ops what age your boys were and how it affected them. Am worried that at 3 mine will be old enough to know he is different and (given that ops only start at 3 and he will need at least a couple more) he is obviously going to remember all this. Any advice on dealing with this? The consultant said it will only become an issue when he toilet trains because he won't be able to wee standing up as he is at the moment.... When do boys normally start to wee standing up? Have you been given any idea about what may have caused it? I know it's hereditary but neither DH or I have anyone in the family with it (that we know of, not really something you bring up at family reunions is it?!!)

Also, any recommendations for consultants? Not sure what the etiquette is on here for discussing health professionals. We are in London and I like the consultant we're under well enough, but want to get a 2nd opinion on the age issue, and not sure where to start looking. Probably Gt Ormond St?

Would love to hear from anyone in the same boat!

OP posts:

Original poster

minimuffin · 04/04/2007 22:54

PS thanks treacletart. I had read your earlier threads and it was the first account I'd read of what happens in the operation. Our consultant just said he'd tell us nearer the time because it sounds far worse than it is and didn't want us to worry etc etc. So it was quite a shock to read what happens but I think I needed to know that - I like lots of time to prepare, gather info and think things through as it really helps me deal with stuff (childbirth was a classic example!).

The good thing is that all the boys seem to be coping well which is all that's important at the end of the day. Thanks again, I will keep an eye on this thread xx

OP posts:

foxybrown · 05/04/2007 09:18

Hi Minimuffin, sorry I went to bed.

I think its harder now because I am more aware of him as an individual, its not my willy and I don't know or truely understand the psychology behind a male and his willy. I don't know if he should keep the foreskin for any unforeseen problems in the future, does it hide the problem or add to it. But once its gone, its gone.

My decisions now are whether or not to circumsize. Its the foreskin which makes his penis abnormal as it has holes in it, but I'm not convinced it doesn't help his weeing.

foxybrown · 05/04/2007 09:29

Also, Minimuffin, I meant to say, I'd be interested to know of anything you find out about the condition, if you don't mind. Let me know if you want to get in touch about it and you can have my email. We are probably not too far from each other if you are under St Georges, as its my local hospital.

michaelad · 05/04/2007 09:38

Hi muffin, I can't offer much advice really. My ds1 was diagnosed with it (mild form) very soon after he was born ( by one doctor and healthvisitor in Harrow). But every other doctor and health visitor we have seen since has completely dismissed the diagnosis! Mind you, the ones in Harrow were abysmal to say the least..so it did not suprise us to find out that, in fact, there was nothing much wrong with him. He is still peeing sitting down and it might become an issue at school, so that's something we need to talk to him about anyway. As far as circumcision goes, my dh had it done a few years ago and I can thoroughly recommend it! If it helps your son longterm, go for it! He will forgot the first couple of painful days in no time!

foxybrown · 05/04/2007 12:16

This is a personal question, but I was wondering if anyone has a PARTNER with this condition. I can't help but think about my little boy when he's older, and that's what stresses me - that any decision I make now could affect him later, and that I might make a wrong one. There's no information from older males, the only site I found he said he regretted being circumsised as a baby as it could have been used later on, and that's why I resist having DS done.

Original poster

minimuffin · 05/04/2007 15:16

Hi foxybrown - I'm in Wandsworth and yes, wouldn't mind a chat about it if you can give your email on MN? I would also be really interested to know of any adults with the condition because like you say, that is one of the main worries.

OP posts:

foxybrown · 05/04/2007 15:53

I probably have see you around! I'm Wandsworth too. Do you frequent the One Clock Clubs?

Original poster

minimuffin · 06/04/2007 20:12

No, I keep meaning to but haven't got around to it - are they good?

OP posts:

foxybrown · 06/04/2007 20:22

yes, they are once they are up and moving. I'm just trying to figure out if I know you!

onlyjoking9329 · 06/04/2007 20:24

My DH and his twin brother had this, they didn't have an op until they were 12, they both had the foreskin removed. DH has not had any problems as a result of the op.

onlyjoking9329 · 06/04/2007 20:25

we have one DS and he doesn't have it. don't know anyone else in DH s family that has it either.

foxybrown · 06/04/2007 21:24

Onlyjoking, thanks for that. I don't want to ask any questions as it seems so much more personal talking about your DH rather than our DSs, but my fear is that when DS is older a sexual partner might notice and this might affect him. Do you mind if I ask if it made any difference to you? please don't answer if you don't want to, I don't want to pry.

I have this fear that someone, one day, will say something and destroy his confidence I suppose. Probably not a rational fear, admittedly.

onlyjoking9329 · 06/04/2007 23:09

No problems Dh told me when we first met and to be honest it did look a little different with the scars but it works ok and we have three kids to prove it!

Original poster

minimuffin · 11/04/2007 13:30

Sorry to vanish we went to my parents over Easter and I didn't get chance to go online! It's really good to know that it can all be corrected and hopefully leave only physical rather than psychological scars onlyjoking because I share foxybrown's worries. Maybe us having to be very frank and open with our sons about it will help make them very frank and open with their future partners about it. That's my hope anyway.

Foxybrown I doubt we know each other as I only have the one boy who's just turned 1 and I've been a bit rubbish at getting into the mums' scene in Wandsworth I've been so busy for the past year doing up our house. I've probably seen you in Waitrose as I seem to spend half my waking hours there at the moment. My email is just my name so I feel a bit funny giving it on here. How can we get in touch offline?

OP posts:

foxybrown · 19/04/2007 20:06

hi minimuffin, I also dropped of this thread!

By all means contact me on [email protected]

foxybrown · 19/04/2007 20:06

off this thread I mean

lovemybabyboysomuch · 14/11/2007 17:11

Hi everyone, i'm new to mumsnet and have been searching Hypospadias and got totally freaked out by all the horror stories on the internet but have found all the threads on here really reassuring. I just wondered how everyone has got on with their little one's surgery? Mine is going for his op in december and naturally am dreading it. Foxybrown, i also have all the same worries as you about when he gets older etc. Also would love to know what caused it as i took extra care of myself during pregnancy and just can't think what it is. Hope you are all well

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