Peyronie’s disease, one mans personal journey fighting this debilitating condition that afflicts men:  fibrous tissue bending the pen*s

Named after the French surgeon François Gigot de la Peyronie who described it in 1743,  this is a condition in which patches of scar tissue (fibrous plaques) develop along the shaft of the penis. This can result in changes in the shape (bending or deformity) of the penis, painful erections and difficulties with having sex .

The options for treatment include medicines taken by mouth, applied to the surface of the penis or injected into the scar tissue. Stretching, electrical treatment, lasers and surgery are other options. In rare cases, the condition may clear up completely but most men find that it either stays the same or becomes worse over time.

 

plaque-peyronies4
Peyronie’s disease usually occurs in middle-aged men, and it’s estimated to occur in 1% of men.

sad-man-and-rain-1330349202VkV

The Journey
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%).

 

Peyronie’s disease6.pngThe 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.

 

 Peyronie’s disease3
The bigger the bend the more pain a man can experience when erect and attempting to penetrate. At times in the location of the bend, the penis can narrow causing the penis to shrink or be less firm from the bend point forward.

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.

bench-man-person-night

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.

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 still battle to accept all that’s happened. Recently, my surgeon said my angle was good. But what about the missing inches?

Peyronie’s disease7.png

 

Straightening the penis with plication is achieved by shortening the convex side of the penis (ie, opposite the plaque). Plication is generally performed in men with adequate penile length

It finally hit me – this is irreversible. This may feel like a tragic, but that’s how illness is sometimes – there’s no going back.
The penis still bends a little and has lost some of its staying power, but it works in a new relationship, sex life is back…..

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s