Steve Baker, 62, from Essex, has hypospadias, a genital defect
Those affected have a malformed opening in the penis
‘It affected my self-confidence and my entire personality’
Steve Baker’s entire life has been blighted by a condition that doctors, girlfriends, his siblings and even his own mother were too embarrassed to discuss with him, let alone have properly investigated.
It was only three years ago, at the age of 59, that Steve finally discovered he was not the only man in the world so afflicted.
Steve has hypospadias, a congenital defect of the penis.
For many men like Steve, the advent of anonymous internet groups has finally provided somewhere they can talk about the problem.
And it is a common one, thought to affect up to one in 125 men, according to the only research study done – a vastly higher number than was previously recognised.
Those affected have a malformed opening in the penis, which may not be at the tip but somewhere on the shaft or even right at the base of the organ.
They may also have a ‘micropenis’, a penis measuring smaller than 2 ¾ inches long, a problem that the historically male-led medical profession has had trouble acknowledging.
The cause is unknown; and although some studies suggest environmental pollution or exposure to female hormones in the water supply could be responsible, these suggestions are disputed.
Whatever the cause, it means normal urination, normal sex and even the routine scrutiny of school changing rooms are a debilitating nightmare.
Those with the most extreme form of the condition have sometimes been mistaken at birth for girls, channelled into early surgery and forced to live as women, regardless of their male chromosomes.
It is a deeply distressing and taboo subject for many, who may suffer in silence for years, as Steve did.
‘It was a huge relief to learn I wasn’t the only man affected,’ he says.
Steve, who says his penis is little more than an inch long, was at least brought up as a boy. Growing up in the Sixties in a small village outside Chelmsford, Essex, however, he always knew there was something different about him, but had no-one to turn to.
‘Someone should have told me what was wrong with me because my life could have been very different,’ he says. ‘If my parents knew there was something wrong with me they never said, nor did the doctors who must have examined me as a baby.
Presumably they must have seen it. It’s all very sad. They must have just all been too embarrassed to mention it.’
His brother Chris, just two years older, and sister Joanne, a year younger, were similarly appalled into silence and did not even contemplate the normal teasing between siblings.
‘But I still knew there was something that wasn’t right. Apart from the size of my penis, the opening is not right either. It comes out on the side of the head and not at the tip.
‘There is no question it affected my self-confidence and my entire personality because of the importance that society places on the size of men’s penises.
‘My mother still thinks we’re a close family, but we never were. Talking about emotions or feelings or anything meaningful wasn’t something we ever did and there was no way I could have talked to her about it and I certainly couldn’t as an adult.
‘When I was older I never got undressed in front of anyone, in fact I still don’t. I used to like swimming at school, but wearing those Speedo swimming trunks was torture.’
Steve trained in farming at Writtle College, now part of Essex University, and in the Seventies went to New Zealand for a year to work on farms.
Still uncertain about what might be done to improve his sex life, he consulted a specialist urologist in Auckland, New Zealand in 1976. Extraordinarily, this doctor also failed to diagnose hypospadias, but decided to circumcise Steve, then aged 21. In the process he accidentally removed nerves from the tip of the penis, thus making orgasm almost impossible and mutilating the penis further.
‘It was a completely botched operation,’ says Steve. ‘I was left with no feeling at the tip or much sensation of any kind. If I’d known then the issue was hypospadias, I would not have gone near the guy. I have no idea why he decided to circumcise me, and the idea of complaining about the damage wouldn’t have occurred to me. It was all too embarrassing. I just had to live with it.
‘With the combination of lack of size and lack of sensitivity it became very difficult for me to have an orgasm.
‘I have the same sex drive as anyone else, the same desire for love and intimacy, but it takes me half an hour to 45 minutes to ejaculate. It is not a great basis for a relationship.’
Having returned home with his problems made worse, Steve went to Saudi Arabia to work on an indoor dairy farm in the desert, and from there to a cattle ranch in Saskatchewan, Canada.
At 29, he married his best friend’s sister, a girl six years his junior, who he’d known back home in Essex since she was 13. She had no idea about his condition beforehand, and was sexually inexperienced.
Despite the difficulties of their sex life, the couple set up home outside Edmonton in Alberta, Canada, where Steve, who re-trained as an oil industry accountant, still lives. Steve fathered two sons, now aged 30 and 28, but the marriage collapsed in 2001 when the boys were 16 and 14.
‘We weren’t destined to be together for ever, but the sex didn’t really help,’ he says. ‘It was just so difficult, it didn’t really happen. I have only had one proper relationship since and I haven’t had sex with anyone for a long time.’ He is surprisingly jocular about it: ‘Even if I was the sort of man who would pay for sex with a prostitute, a woman wouldn’t have time for me.’
The underlying pain, however, has evidently affected his life. ‘Basically, I have a sex drive but no ability to perform,’ he says.
Today he is retired and enjoying the great Canadian outdoors. Hiking, cycling and playing badminton fill much of his time.
But he lives alone and the winters are long and dark. He is close to both his sons, but his self-diagnosed hypospadias has raised another issue. It can be hereditary, and Steve is worried he may be inflicting the same vow of shame and silence on his own sons.
‘The internet groups have shown this condition is much more common than doctors think but no-one talks about it,’ he says.
‘My older son has a girlfriend but no children and my younger son is married with a daughter and a baby boy due in February.’
Up to 20 per cent of those with the condition will have a similarly affected male relative, according to nurse Grace Blodgett, author of medical textbook Understanding Patients’ Sexual Problems.
‘There is not enough training about sexual issues in medical or nursing schools,’ she says. ‘Nurses should notice it because they are changing nappies in hospitals, but sometimes they don’t and many of these boys have miserable lives.’
She also points out that more than 400 operations have been proposed to ‘repair’ hypospadias. Many are not performed by specialist surgeons leading to sometimes botched results.
There is now general agreement that the condition is best diagnosed and surgically repaired in the early years when a baby will have no memory of the trauma, and wounds – caused by rebuilding a urethra to exit at the tip of the penis – are likely to heal well.
However, there is no agreement on what exact age to operate and no means of comparing operations to see what works best.
Simon Kenny, a specialist paediatric urologist at Alder Hey children’s hospital in Liverpool, who regularly treats hypospadias, says diagnosis is hampered by parents’ reluctance to discuss it.
‘Outside middle-class, urban families, people are still very prudish,’ he says. ‘The problem nowadays is usually, but not always, picked up by post-natal checks.
‘My normal approach is to then ask the parents if they have noticed a problem. Mostly they say they haven’t. They either don’t notice or don’t want to say.
‘I am surprised about [this attitude], but I would say that anyone with concerns should ask to be referred to a specialist surgeon, and ask how many hypospadias ops they’ve done, or track someone down through the hypospadias support group.’
Steve would be delighted to put the clock back to before his brush with the New Zealand surgeon, but says: ‘I can’t change the past but I am now determined to talk to my sons about this, no matter how difficult it is. It could make all the difference to them, and to any grandsons I may have.’
For more information go to hypospadiasuk.co.uk
Steve Baker is a pseudonym.