clinic, crooked stick, lovelife, words

Bent Nail Syndrome (Three Things I Didn’t Know about Peyronie’s Disease)

I discovered that some doctors call Peyronie’s Disease bent nail syndrome. I prefer crooked stick, but appreciate the colloquial variety nonetheless.

I wrote an article about Peyronie’s and sent it to a national broadsheet. They liked it, were very positive, saying they’d run it soon. And then sat on it for months. The piece never got published.

Lately I’ve read up more on PD. You could argue that the time for reading was before the op; that it’s a bit late now. But I’m like a detective in a crime series, who stubbornly keeps returning to the scene of a crime that remains unsolved, repeatedly sifting the clues. (Well, in my dreams I’m a detective.)
In an article on Salon from 2007, Peter Kurth’s doctor describes the disease as ‘partial penile disassembly’. They discuss his treatment options and Kurth’s urologist outlines the good news and bad news on surgery: ‘You’ll lose two or three inches. No more Peyronie’s, but no penis, either.’
I’ve lost about a two inches in total to PD so far. I still have a bend, and a bit of hourglass kinking, although not as bad as before. The pea-shaped lump persists, but my surgeon says it will fade out eventually. There is also a ring of scarring towards the top, a hard ridge bulging beneath the surface of the skin that is ugly and tender.
Before surgery, I couldn’t have intercourse, but post-op I can; although it’s not like it used to be. The erections aren’t premium grade – I’ve gone from solid iron to bendy metal. Which means you’ve got to aim carefully, as misfires really are to be avoided. The minute you’re thinking this way – no bendbacks, must aim carefully – well, sex is no longer the crucible of wild abandon
But, at least I’m capable of doing it again; and this has to be a good outcome. I tell myself to be pleased. It’s hard to be orgasmically delighted though when your new best is far inferior to what your old best used to be. But, I guess that’s illness for you.
I try working on perspective. How bad is this disease? It doesn’t kill you and much of life goes on unaffected. One writer on the subject grades PD as being comparable to losing an eye, or a hand. I don’t feel it’s that bad, but agree when he says, ‘if you get severe Peyronie’s… you have a right to feel that life has seriously dumped on you.’
A Picture of the Crooked Spire of Chesterfield, England
this is a crooked spire
The reading I did recently was largely about making another attempt to to understand how I got PD in the first place. I’ve done all this before. But you never know for sure, so you keep coming back, trying to figure it out.

I have my theories.It’s actually almost a moral tale, but not the one we’re supposed to tell.
I was working from home one day about four years ago. I logged into the office from my kitchen table. That morning the landing page of the media company I work for featured a cancer charity ad. It was about prostate cancer, with a helpline number flashing onscreen. I had no clear reason to call them. I just thought, be a sensible, law abiding male for once, it’s men’s healthyou’re a man, remember  – so I picked up the phone. It was the wrong thing to do. 
The guy on the helpline asked lots of questions and soon ruled me out of the at-risk pool. The interview raised one anomaly though – the frequency of my trips to the toilet, especially at night. The guy said a man my age shouldn’t have to go twice, or even three times, and that I should get that checked out.
So, I got it checked out. I saw my GP and he referred me to my local hospital, where I ended up making regular visits to the urology department for assorted tests. The appointments always started with me being required to drink litres of water –  to make me urinate, so they could measure the strength of the flow. I now reflexively associate hospitals with water coolers.

They put me on pills. I tried one lot and then another kind. I only remember the second one, and its name was Finasteride. A lot of people with PD find the name Finasteride makes their tummy sink. They claim that taking this drug caused their condition. I heard rumours of class action law suits against the drug manufacturer.
Finasteride was first developed as a treatment for an enlarged prostate. It was also discovered to help with male hair loss. With Finasteride, there is a suppression of di-hyrdro-terstosterone (DHT), a hormone which causes hair follicles to go dormant and eventually die. Thus, by suppressing DHT, the lifespan of hair follicles is improved and can encourage hair growth. However, it would seem that tampering with one hormone may impact on other hormones, and this is why some men on Finateride experience water retention, weight gain and erectile dysfunction.

this is a leaning tower

I stopped taking Finasteride after a few months. Not because of any of the above, but because it had no impact on the frequency of nocturnal trips to the toilet. A while after I got PD, I found an old box pills in the bathroom cabinet. On a whim, I read the disclaimer leaflet for side effects. The warning list covered just about all medical eventualities, including a reduction in the hardness of erections by 10 to 15 per cent.

I read this and a light bulb went off in my head. Those dim, vague, elusive half thoughts we have, but don’t follow. This was one of those half thoughts. For months with Vela we’d been having sex, and I’d been going my usual hell for leather, while not paying attention to the half formed apprehension, near buried and out of view in the distant background gloaming of my brain, that maybe I wasn’t as hard as usual. Those big fun nights, the too much fun with coke nights, when you can go on and on and on, like Roxy MusicBoth Ends Burning… they didn’t seem like such a good idea now. 

That’s what did it then, I decided. 

But, what do I know? It’s all a bit vague really. Was it really the sauce?

Historically, inquiries into the cause of PD has been pretty patchy. On the Bent Nail blog, the author paraphrases Italian research which performed a case-control study of 134 men with PD and 134 male controls. The study found that some men appear to have a genetic predisposition for the illness. It also discovered that men who had undergone invasive procedures on the penis (for example urethral catheterization or a cystoscopy) had a 16-fold increased risk of Peyronie’s. 

Sixteen-fold!  I read this, and read it again, out loud, and gasped almost with a painful flashback to the memory of my own cystoscopy. Was that it then? The source, the cause, my own smoking gun finally?

A cystoscopy is a medical procedure used to examine the inside of the bladder using a cystoscope, which is a thin, fibre-optic tube that has a light and a camera at one end. The cystoscope is inserted into the urethra (the tube that carries urine out of the body) and moved up into the bladder.

I had a cystoscopy during the period I was on Finasteride. I remember feeling anxious and tense at the hospital waiting for the procedure to begin. After all, who wants a probe up there? Don’t answer.

Often the thought of bad things to come is the worst part of it. But actually, in this instance, the cystoscopy was the worst part. They said I could watch on the TV screen as the camera explored my bladder. I turned my head away. It hurt. But also, it really made me want to urinate. Urgently! I was convinced I was going to piss all over the camera. And then I realised it was actually the probe making me feel like this and that I wasn’t going to wet myself after all.

When it was over, the nurse who’d seemed friendly and kind before the procedure, now seemed distant. She had elaborate nails and hair. I wondered if she thought I should have been more brave, and not looked away. 

I hobbled out the hospital and into the park. It was early spring and sunny. A family of ducks crossed my path in a neat line. They looked funny and I took a photo for the Annoying Son (he actually wasn’t that annoying back then). The first few hundred metres walking home really hurt. 

    Calling the cancer charity was probably what got me Peyronie’s. If I could go back in time and return to that morning, I’d be sure to pass over the cancer ad and get straight on with work. I’d definitely skip the Finasteride pills, and the cystoscopy, and probably still have my old penis.

‘It’s most likely that Peyronie’s Disease is a pathologic reaction to common micro-trauma of the penile vasculature… Men [without the genetic predisposition] may develop small scars or non-significant plaques, men [who do have the genetic predisposition] develop plaques and pathologic scarring.’

And the future? ‘Long-term patient satisfaction after surgical correction of penile curvature… can be poor.’

In his 2007 article on Salon, Peter Kurth’s doctor gives his own simple treatment plan for managing Peyronie’s: ‘I want you ejaculating all the time…. if you want your weenie to look like something other than a…pretzel…’
My surgeon pretty much intimated the same. He didn’t say it out loud, he just intimated; because, in the end, this was Harley Street.  

It is the second time in my adult life I’ve had a doctor urge me to masturbate. (The first occasion is another story entirely.) I was raised a Catholic, and we all know the dim view the Church takes of the spilling of seed. So I like it when a doctor says do it, go on, be like Onando it, and then do it again.  

Picture of a Cummins Onan Mobile Power Generator on Shop Display
a portable power generator from CumminsOnan

A week after the op on my crooked stick, I went back to work. Riding the bike was not an option, and for several weeks in the lead up to Christmas, I took the train, staring out at the city’s increasingly ruined skyscape. 

For several weeks, I shuffled around the office and winced and occasionally hammed it up. Not a word was said. 
It was my fault. Up front I should’ve just told them what was happening. But, did I really wish for my colleagues to know; and was is it ever going to be something they wanted to hear about?
I felt pulled both way by contrary forces. This is a good epoch for emotions. There has, perhaps, never been a better time to share how you’re feeling. And yet the social topsoil of joking and banter encourages, even urges, that we glibly cope in the face of setbacks and adversity. After all, everyone has their own problems, and life must go on. 
Sometimes though, you read something that gets to heart of it, like this brilliant article by Yvonne Roberts concerning male suicide, our emotional reticence, and hierarchies of need; and you read this quote from Thoreau, ‘The mass of men lead lives of quiet desperation’, and the emotions begin to stir and rise. 
You know that you’ve felt fragile these last few years, and mostly been by yourself with it; and a kind of shudder runs up and down you at the thought of how dark you’ve felt a couple of times.
But then you instantly, reflexively auto-correct, and say I’m strong though. I have resilience. (I’m Gloria Gaynor.) And you tell yourself that these last few thoughts, these last few sentences – the dark, sad ones – well, they were emotionally unbuttoned, a bit self-pitying, and rather dramatic, perhaps; and maybe you should dump these last few sentence when you edit this down later. We’ll see.
Gloria Gaynor, I Will Survive
The Three Things I Didn’t Know About Peyronie’s (Recap)
That there may be a genetic predisposition; that some pills may cause it to break out; and that invasive medical procedures might bring it on.