Living with hypospadias: 'I never felt confident about getting married, have never got involved with anyone in that way, and never will'

Not everyone is born with a perfect penis. There is a birth defect that affects 1 in 125 baby boys but which most of us haven't heard of and still fewer feel able to talk about. Wilf Stevenson is setting up a self-help group.

Derek is in his mid 50s, and is a care worker in the Midlands.

"I knew from an early age that I was 'different', though my parents never talked to me about it or explained anything. I remember going to hospitals when I was 5 or 6 and that the doctors looked at my private parts, which I dreaded. I had a miserable time in school, being constantly teased about my deformity in the swimming pool and when changing for games. When I left school I tried to find out why I was different from searching in the public library, but could never discover anything. Eventually I decided just to get on with things, but I never felt confident about getting married, and have never got involved with anyone in that way, and never will".

Derek is talking about hypospadias.

Hypospadias and Epispadias are birth defects that result when the penis doesn't develop properly in the womb during pregnancy.  Normally the urethra (the tube that serves as a conduit through the penis for urine and semen) runs the entire length of the penis, forming an opening at the tip.  However, the penis sometimes does not form correctly and the urethra forms an opening on the under side of the penis (hypospadias) or the upper side of the penis (epispadias). The diagram gives some idea of the difference.

You may not have heard of the conditions but they are actually one of the most common birth defects and rising. Hypospadias and Epispadias used to affect about 1 in 300 male births in the UK but its incidence is now up to, according to some estimates, 1 in 125 male births. We don't know why this should be.

What this means is that while many male readers may not have hypospadias themselves, their sons are twice as likely to have it, perhaps more.

Whatever the precise figure, there are a lot of us around - yet these conditions are not well known, and despite the anguish and pain cause to many millions of men in the UK and world wide, are rarely mentioned in the general press or in the media.

What are the results of hypospadias?

The most common physical consequences of untreated hypospadias are difficulty urinating while standing, and a distinctive appearance of the penis, with a "mushroom" shaped head, and a distinctive "hood" of skin instead of a foreskin.  Curvature of the penis might also be present, which can cause painful erections, and there is increased susceptibility to urinary tract infections. Other problems may include a congenitally small penis which may not grow properly at puberty. There is no evidence that men with these conditions have more infertility problems than anyone else.  However, in severe cases, the hole may be so far from the top of the penis that semen may not easily enter the vagina.

But there are substantial psychological consequences of hypospadias, which can often start with any medical investigations carried out when the child is as young as two or three, and which continue through school, puberty and when adult relationships come into play.

So much in our society is centred on the perfect body and, by implication, the perfect sexual relationship that it is not surprising that a defect in that department, combined with a lack of information about the condition, can have devastating consequences for those afflicted. Many of the problems that boys have faced stem from the fact that their parents never talked about their hypospadias at all, especially in mild cases. But when the boy goes to school he soon learns that his penis is not like other boys' penises, and this awareness of a secret, "untalked-about" difference can lead to a strong sense of shame and abnormality. Alongside this as the boy goes through puberty, he may harbour doubts about his attractiveness to sexual partners and perhaps his ability to engage in intercourse and successfully father a child.

A number of organisations and groups have been set up recently to help deal with the lack of information about hypospadias and epispadias, and in particular to help parents (it is usually the mother) of young children decide what, if anything, to do about the condition that their son has inherited.

From the discussion forums on these groups it is clear that not only is there a problem with the way information is provided for parents in the crucial few weeks after birth, but the real options for coping with this condition are rarely made clear by the urologists involved either to the parents, or to the patient in later life. Corrective surgery is often suggested — though several operations are often required, and they may have to be repeated, and the cosmetic improvements may be questionable. But in many cases the right decision may be to defer the operation until the boy is old enough to decide for himself. Not an easy decision, and, in any case, much more needs to be done in the way of counselling and the provision of information and advice to the family and to the child.

Here is a mother:

"My first son was born in 1992 with moderate hypospadias. Back then I had no access to computers and didn't do any research into the topic, I was just told that it had to be fixed (and who was I to argue: I'm not a doctor)…. But, if I only knew the things I know now. Don't get me wrong, I would have still had it corrected but I would have had the power of knowledge at my side to fight inexperienced doctors. "

Here is Jim, now 52 born in the UK and now living in Australia:

"I have a moderate hypospadias with the opening not far back from the base of the glans. And what do you know, it all works fairly well without any pain, strictures, scar tissue or misshapen erections. It's not perfectly straight and it is sometimes hard to pee in a straight line and needs a lot of control but it can be done. I got better at it as I got older and can control it fairly well so that I can pee with accuracy and without it spraying everywhere. I also have full sexual function and never had any problem with achieving fatherhood.

My parents never talked to me about my condition: I am now 52 years old, and their decision was taken at the end of the Second World War when plastic surgery was in its infancy. Therefore, they probably took the view that the risks far outweighed any cosmetic results that might have been achieved. So I was saved the pain of the surgery, and scars and uncertain results. I still have my hypospadias. I eventually told my father that I was very happy at what they hadn't done, but what had hurt was that they told me absolutely nothing about it.

My son also has hypospadias. And yes, to save my son some of the embarrassment I had as a kid growing up in school, we had his hypospadias corrected. Two operations were carried out at Gt. Ormond St in London at the age of between 2 and 3, fortunately with no ill effects (he told me). I doubt that I would have done the same thing today, but at that time, I knew nothing of the risks and he has said he was glad we did it.

What can be done?

Remember, this is a condition which is affecting more and more male children each year. To assist the parents and the boys themselves to cope with this condition it is important that: 

• more research is done into the causes of this condition, its genetic components, and in particular why its incidence is increasing at such a pace.
• more information needs to be available about the condition and its varying degrees of severity: the more people know about it, the more it will also not be an issue for those who suffer from it, and their sons.
• more information needs to be made available about the risks of the operation, the effects of scarring, and the psychological effects.
• more psychological and counselling help needs to be available to the parents of boys born with this condition, particulary in the first few weeks after birth.
• more psychological and counselling help needs to be given to boys and men with the condition, whether or not they have the operations, to help with school, through puberty and as they form their own relationships

Websites

A number of websites now exist which offer advice and support to those suffering from this condition, and their parents. We hope to be able to more of this in the future, and to offer direct support if there is demand for it.

• Hypospadias and Epispadias Association (US Based): www.heainfo.com
• A great source of information: www.the-penis.com
• General advice and support: www.hypospadiashelp.fsnet.co.uk
• Parent support group: www.hypospadias.co.uk
• BBC info: www.bbc.co.uk/health/ask_doctor/hypospadias.shtml

Wilf Stevenson has mild, uncorrected hypospadias. He is 57, married with three children, and has no close relatives with the condition. He has set-up a Patient Group for men with hypospadias, and for parents of young boys born with it, and would welcome contact with other men with the condition and professionals directly involved in providing treatment and support for hypospadias.