Three years ago, just after I turned 50, I discovered a lump in my penis; hard, painful and the size of a pea. I went to my GP, who panicked and muttered “suspected cancer”.
He dispatched me for a next-day hospital appointment where the senior urologist examined me and declared: “That’s not cancer, that’s Peyronie’s.” My first thought was it sounds like a beer. And the second – I’m glad it’s not cancer.
Versions of this refrain were recited back to me over the next few months: be grateful it’s nothing sinister. The inference being, man up. But that was not easy the more I found out about my condition.
Peyronie’s disease is a tissue disorder; hard fibrous lumps grow in the penis, causing it to bend and shorten. It affects between 1% and 3% of men (although some specialists suggest rates could be as high as 8%).
The cause is rarely clear. I had my suspicions, though. The pills I took for a prostate problem? The invasive cystoscopy from a few years back? Rough sex? Genetic predisposition? Experts talk about all of these as possible links but they don’t really know.
Meanwhile, my penis felt weird. It had become my enemy. Each time I had an erection, it hurt. This is when I discovered how many erections men get while asleep: 10-12 per night on average.
Six to nine months after I first noticed something was wrong, the pain had receded, but the lump was still there, and a bend had developed. When erect, my penis had twisted from its previous straight up to bent at 90 degrees.
Once I’d been diagnosed, a round of scans, tests and examinations began as I was shunted between two hospitals and four consultants.
There’s no guaranteed fix for Peyronie’s. Over several months I tried pills and oils, and also vacuum-pumped my penis for 30 minutes daily in a plastic cylinder until it ached, hoping to disperse the lump.
The diagnosis arrived at a difficult time in my life, during the last months of a long-term relationship. By the time we had separated, my condition was so bad that we couldn’t have sex. Not just because it hurt, but because structurally it was no longer possible.
There followed many months of singledom, wondering: what am I supposed to do? Who could I share the big news with that my penis was so out of shape? It’s not something you announce at a dinner party. So, mostly I kept the Peyronie’s to myself.
I wanted to meet someone new, but what kind of romantic life could I hope for? I know that coupling isn’t simply about intercourse. But I wasn’t ready to lose my sex life.
At the end of 2014, after months of medications and treatments, with the bend only getting worse, I took my last resort and had a piece of my penis cut out. This surgical method of straightening (called plication, or the Nesbit procedure) removed much of the bend but also almost two inches of length.
The loss hurt. In fact the whole thing hurt. When I woke up and saw the large stitches, I wanted to throw up. Yet, before surgery I couldn’t have intercourse. Post-op, I can.
I met my new partner through online dating. We emailed back and forth for weeks and I told her everything before we met.
“Wow, I didn’t expect that,” was all she said, and it really didn’t faze her. She was sympathetic from the start. We got together and when it was time to try the new penis out, it was fine; in fact, it was great.
I still battle to accept all that’s happened. Recently, I saw my surgeon. He said my angle was good. But I wanted to shout, what about the missing inches?
It finally hit me – this is irreversible. I have to remind myself that the loss may feel tragic, or disappointingly not what I wanted, but that’s how illness is sometimes – there’s no going back.
OK, the penis still bends a little and has lost some of its staying power, but it works. I’ve found a new relationship, got my sex life back, and it’s time to move on.
• Renlau Outil is a pseudonym.
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