48 year old in the UK

I was born in 1960 with mid-shaft hypospadias, and underwent three-stage surgery between the ages of three and five, approximately, at Great Ormond Street Hospital in London. The results were good as far as they went – I could pee standing up, and so on – but what nobody knew was that the surgery was storing up problems for the future. As time went by, I developed a diverticulum at the point where the urethral meatus used to be – a sort of pocket our pouch off the urethra, where urine collected. This caused me frequent pain, and had a tendency to empty later, which was embarrassing.

I was discharged from aftercare at about the age of seven, as I recall, and during my adolescence, when these problems started to become more obvious, I didn’t feel able to talk to my parents or doctor about it. I think there’s a real need for long-term post-operative care and counselling for boys and young men with HS, because the issues don’t just go away with surgery. Apart from the physical problems, there were issues around the appearance of my penis which caused me a lot of unhappiness as I grew older.

Despite all this, I had a pretty active and happy sex life throughout adulthood. I’ve always been very self-conscious about my cock, and don’t really like people seeing it or touching it – but, weird as this may sound, that hasn’t been such a big problem. Occasionally I’ve been rejected because of it – but it’s not prevented me from forming a very satisfying long-term relationship with my current partner.

The physical problems got worse in my 30s and 40s as a stone formed in the diverticulum – a hard lump about the size of a pea, which I assumed for years was scar tissue of some sort. This was caused by a build-up of uric acid crystals, I believe, and is not uncommon. It started causing urinary tract infections: I had two really bad ones in quick succession in 2007. These UTIs finally prompted me to seek medical advice – and my GP immediately referred me to a consultant urologist at Guy’s Hospital. They did several tests and then referred me on to a specialist at UCLH, who advised me that I should have a two-stage repair to a) remove the stone and the diverticulum and b) rebuild the urethra and do some work to improve the appearance of my penis, reshaping the glans and straightening out the chordee a bit.

I’m currently half way through that process – the first stage was in April 2008. I feel much better, both physically and personally. Physically, because I realise that the stone had been causing me a lot of low-level, chronic infections which were making me feel generally unwell. It was also quite uncomfortable during sex. Personally, because I have finally faced up to my “dark secret” and done something about it. It’s hard to describe how great this feels – it’s like a big weight being taken off my shoulders. Anyone who’s gone through similar experiences will understand.

What enabled me to face all of this was the support of friends and loved ones. My partner has been great, he’s always been willing to listen to my concerns and has been very reassuring about all my worst fears. And I’ve had tremendous support from a couple of other men with HS whom I met through the old Yahoo groups. It was this experience, of meeting “sufferers”, that initiated the whole process of being able to face up to my HS, tell my partner about it and seek medical advice.

I do have some serious misgivings about the way the medical establishment treats HS. While the surgeons and the care staff at the hospital are absolutely brilliant, I’ve received very little information about what was going to happen to me, and absolutely no counselling whatsoever. I’ve been badly handled by incompetent hospital administrations who have routinely cocked up appointments, and then don’t understand when I get angry or upset. There is absolutely no recognition of the fact that it’s hard for a man to deal with issues relating to his genitals; you’re expected to breeze through it exactly as you would if you were having your tonsils removed. I’m quite a tenacious and assertive person, so I’m prepared to demand information – but even so, I’ve been kept in the dark a lot of the time.

The medical establishment needs to take a new approach to HS, caring for young people whether they have had surgery or not, and striving to inform adults with HS about the issues they may face. I’ve been told now that anyone who had HS surgery in infancy is very likely to need a further repair in adulthood – but I had never heard that before. If that was more widely known, I would have consulted a doctor years ago, and saved myself a lot of unhappiness. I also think that any surgery which involves a man’s genitals should be accompanied by some form of pre- and post-operative counselling. Men’s health generally is not taken seriously on this level – compare the kind of awareness and counselling care that’s extended to women who have breast surgery, hysterectomy etc. This is just as traumatic, just as invasive, and just as intimately bound up with our sense of self.

I’m hoping, after the second stage of surgery in a few months, to have a much easier, healthier and more comfortable life than I’ve had to date. I’m still in the dark about what, exactly, the expected outcomes are – but so far, so good. I would really encourage anyone with HS who has concerns or misgivings about the state of their genitals to talk to a GP and insist on a referral to a urology clinic. It’s the best thing I ever did. Also, get online and talk to other men with HS, share your experiences and fears. You are not alone!