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My life with hypospadias (14 mins)

An extra from Intersex: seeking the beauty in difference

In this audio piece, three men talk about living with a condition that affects how the penis looks and works

Hypospadias occurs when the opening that is usually at the tip of the penis is found on the underside. It affects between 1 in 200 and 1 in 300 male babies – yet many of us have never heard of it.

In this audio piece, Chris Chapman meets three men living with hypospadias. James, Paul* and Wilf describe the confusion and shame of growing up different, and the physical and psychological difficulties they continue to face. They also explain how supportive relationships with family, doctors and people on online forums have helped them live better with the condition. Transcript below the player.

 

 

For more information, see:

Warning: This piece contains graphic description of penile surgery.

*Paul’s name has been changed.

Transcript

Paul: The surprising thing is that given the number of boys this affects, most people have never heard of hypospadias.

Narrator: A common congenital disorder and DSD [difference in sexual development], hypospadias is a condition that affects between 1 in 200 and 1 in 300 boys. It occurs when the urethral opening – the pee hole – appears on the underside rather than at the tip of the penis.

The health impact of hypospadias can be significant, especially if it involves corrective surgery, as urination and sexual function can be impaired and lead to difficulties in later life. I spoke with three men and heard their experiences of the condition.

As a child, Paul recalls his experience of surgery to correct his hypospadias.

Paul: I don’t think I actually knew the word hypospadias till my teens, but I knew that I had something wrong with my willy when I was quite young because I underwent a series of surgeries in Great Ormond Street [Hospital] between the ages of about three, four, five. I knew that the hole was in the wrong place and had to be corrected. All it meant was that I had to sit down to pee, because I had mid-shaft hypospadias, which means the hole is halfway down the underside. So obviously you can’t stand to urinate. So as a kid I just had to sit to pee, which I totally accepted and I don’t actually remember feeling even self-conscious about, it was just that’s how I had to do it.

James: When I was born for the first couple of days I actually was given a girl’s name and it wasn’t until about the third day the midwife went, “Oh, hold on a minute, we might be wrong here.” And they then did the DNA test.

Narrator: James was identified as male. Born with hypospadias towards the base of the penis, he underwent a series of surgical corrections.

James: I started seeing a doctor from about six months old. I had about 16 or 17 operations over the next 13 years, in batches. It was corrective surgery to try and repair what had happened before. Each time they would try something different or a different repair. It became very scarred and there wasn’t much tissue that they could work with.

The construction had been such that the urethra and foreskin were very thin. In the groin and crotch area there were a number of sacks underneath where the urine would sit, which would cause the infections, which would then travel back up into the bladder.

There was one very bad period – a set of operations – that because of the construction work that was done right underneath in my crotch they couldn’t insert a catheter and there was an extremely large amount of pain afterwards when I first started peeing. And I was on my own in a hospital – I was about 11 or 12 – and you have a nurse standing there and you’re… err… yeah… It makes it very difficult to communicate to people how you feel.

Paul: When I was growing up I just wanted to put all this behind me and once the surgery was finished and the final check-ups had been done, I felt when I was in my teens and I started to become conscious of some of the problems. There were other things like I didn’t always void completely when I was urinating so there would be a bit of leakage, which is not particularly pleasant. So I did try to conceal the problems and I was very, very self-conscious about showing my genitals in showers at school or in any situation which involved nakedness.

You get these things into your head and you just think, “Oh, no, no, no, I can’t let anyone see that,” so I used to race through the showers. I became very adept at zooming through the showers – those awful communal showers that you have at school – and then drying myself in such a way that the towel was always draped like a classical statue.

James: During adolescence I would try to see other boy’s penises to see what was normal, or what was classed as normal. I know there is no ‘normal’, but what it was like to have a situation where you could stand at a urinal and pee normally. But of course there was always that worry that that was wrong in some way – to try and see what… I mean young boys – we all do it, you know? But to me it would then be if I wanted to look at theirs to see what theirs was like, they would look at mine and then comes the whole humiliation thing of the size, why it looks like it does and everything.

At school – I was at a boys-only school – I would never use the urinal because I felt so different from all the other boys. I would not really want to engage in sport. I didn’t like to be, for example, going into showers after playing football or rugby. I would rather just go home dirty than have a shower or anything.

I had one sort-of relationship with a girl, but immediately there was any mention of any sexual side then that was it. It wouldn’t go any further than that. Even then I didn’t understand where it had come from or what it was. To me, at that age, all that girls would look at it as, “Oh, he’s got a small penis that can’t do such-and-such or whatever.” That’s a chance to get mentioned around or something.

I met my wife when I was 24. We were together for a few years – there was no sexual contact. She didn’t seem to want to push that side of things. After a breakdown in ’93 – possibly because of the hypospadias and my father’s death – I was able to tell her what had happened to me and what had gone on. She has stood by me and supported me, and she was the reason that I went back to have the corrective surgery.        

Paul: My understanding now is that the infancy surgery wasn’t terribly successful because I developed some problems with the urethra. There was what was called a diverticulum, which is where instead of being a straight tube it pouches out where the original site of the urethral opening was. That caused all sorts of problems, including a lot of UTIs – urinary tract infections – which are absolutely horrible.

I avoided health professionals for a long time and then I started to get urinary tract infections. The first big one I can remember was in my late 20s. It was awful. If you haven’t had one be very grateful, they are really hideous – it feels like you are pissing razor blades basically and you get a very high fever and it’s just hideous.

I went to see the GP. He was very dismissive. He basically suggested that I’d got a sexually transmitted infection, just slammed me on some antibiotics, wouldn’t really take it seriously and then had a look at my penis and he was a bit [harrumphs], you know?

Then in my 40s, then I got a series of really awful UTIs. I think what had happened was that this issue with my urethra had become so bad by that time that I wasn’t voiding properly, so there was a lot of stagnant urine and that builds-up infection and so on and so forth.

I think the medical professional was a little more enlightened by that time and he said, “OK, tell me about the hypospadias.” And I was thinking, “Oh God, I’ve actually got to talk about it!” He said, “Look, this is related to that. It’s time to start doing something about it.” And I was booked in for surgery.

James: I had been reading in a men’s health magazine and in there it had talk about a support group for hypospadias. I contacted them. It was actually for a children’s support group for hypospadias, but they passed me to a lady whose son was having corrective surgery who recommended this doctor – a specialist.

Paul: The procedure that they did was a two-stage urethroplasty using tissue from the inside of the mouth, buccal mucosa as it’s called.

James: He split from the top of the penis. He opened it up, all the way down the urethra, right in underneath my crotch, going right the way back – opened it up completely.

Paul: It means opening up the urethra to the point of where the original opening was. And they lay in a graft of tissue from the inside of your mouth because it’s similar to the tissue that your urethra is made of and it heals well and is suitable for this.

James: He corrected the sacks at the bottom. He then used the buccal mucosa – a skin graft from inside my mouth – and reconstructed a new urethra and constructed all the way back up.

Paul: Once that graft’s taken you have to wait for, I think it’s a minimum of six months; I ended up waiting for a year.

James: So then I had a six-month period where I had to pee sitting down because it just sprayed out like a woman.

To look at my penis and see how it then looked was very, very difficult. It took me back to childhood and what had gone on.

But then the second op occurred; stitched all the way back up to the top, proper exit formed at the top of the penis, just the tip of the penis, and hey presto, what do you know?

Paul: Now as soon as the surgery was done I felt amazing. I didn’t realise how under the weather I’d been until this was done. It was like, “Oh my God, I feel 20 years younger.” It was great.

James: As somebody else at the hospital said, “It’s just nice to be able to go to the beach and stand in the sand and pee your name in the sand.” [Laughs]

Narrator: One of the major problems facing those with hypospadias is accessing information, support and advice.

Wilf: I’m Wilf Stevenson and I’m a trustee of the charitable foundation Hypospadias UK.

I knew from quite an early age that I was different, in the sense that I could compare myself with my siblings and with others and didn’t see the same as I saw when I looked in the mirror. But I didn’t actually know what I had until I was in my mid-30s.

A doctor who had to examine that part of my body and just said in passing, “Oh, you’ve got a hypospadias.” And I said, “What’s that?”

Narrator: For Wilf, internet forums provided the opportunity for men to chat anonymously about their condition.

Wilf: I understood a bit more about my condition and I was able to find out by doing some quite extensive research what it was. And of course the great success in knowledge acquisition comes with the internet. First of all, there was a lot of information up on the web, which you can read and see and pictures of it. And also you discover you are not alone; there are loads of people with this thing. It’s a terrible thing that so many people have it, but it’s a great relief for those of us who do have it to find that we’re not alone. You’ll find this from everybody you talk to with hypospadias, this sense of isolation and difference is so strong and the relief at knowing that you’re not that alone is terrific.

Paul: I really didn’t know anybody else with hypospadias and I couldn’t talk about it. I found it very hard to even form the word. I found it almost impossible to talk about it with my partner. I found it really, really hard to talk about it with anybody until the internet connected me with other people.

There were some groups on various platforms like Yahoo! The Yahoo! one certainly was the first one that had really wide reach and I got to know a lot of men who had the condition and we all got chatting, and as soon as we all got talking it was just like this great burden was lifted off my shoulders. For me, the biggest comparison I can make was with coming out as gay – it was like, “Finally, I’m not the only one.”

I have seen counsellors. I’ve had very good medical care, but there’s nothing quite like being able to just share your experiences with somebody else who has been through the same thing and to laugh about it and cry about it, and to just get it all off your chest. And once you’ve done it, that’s it – it’s gone. Well, it’s not gone completely, but it makes a massive difference.

Wilf: What we’ve got to try to get across, and it’s a strand of our thinking in the Hypospadias Trust, is that relationships with other people are not about the penis. They are about everything; your whole body, the way you are, all your limbs, every part of your anatomy is as important in making up that picture – the mosaic of what a person is.    

Paul: If you Google it now you will find your way to some kind of peer support and I really would urge anyone who is affected by this to make that step and to make connections because it really does make a world of difference and you can’t go through it alone.

James: If I were someone just at the end of that first stage of operations, I would’ve said, “Whatever you do now, that doesn’t define you; that’s not you. It’s part of you, it’s part of your life, but it’s not you. You have a right to define yourself in a far greater way than that and not let that one area define who you are.”

Narrator: For more stories about the science of life, visit mosaicscience.com. If you’ve enjoyed this Mosaic podcast, why not hit the subscribe button? And if you’re already a subscriber, give us some feedback by leaving a rating and review on iTunes.