Saturday, May 11, 2013

Three years later: Thoughts on the state of Peyronie's Disease treatment and prevention

Three years or so since my last post, I'm still receiving email questions and comments on old posts.

Aside from being 3 years older, and, of course, having the penile fibrosis of "Peyronie's Disease", I'm fine. My hiatus wasn't due to any untoward event -- it's that my life is very full (overflows really) and I didn't have much new to say.

I still follow the research literature from a distance. There hasn't been much change. Among some articles of note:
The story remains fairly grim for men with severe established Peyronie's Disease. The surgeries are not easy things, and the results are not amazing. This isn't too surprising -- the disease damages the tunica albuginea and associated plumbing; these are complex and delicate structures that we are far from being able to restore. I suspect we'll be able to regrow damaged heart muscle well before we can reverse this kind of damage.

Given that we don't yet have the technology to reverse this damage, the clinical efforts need to focus on prevention of severe disease. We need to catch the disorder early, and slow or prevent progression.

That's a bit tricky, since most people present late, there are probably multiple causes of penile fibrosis, and we haven't really shown we can prevent any of them. There's surprisingly little discussion of any of this, it's weird when one of the best references is in an LA Times sex advice column - penile fractures and Peyronie's disease.

Given our lack of knowledge I can't make recommendations. But, if I could go back in time to talk to my younger self, this is what I would have said:
  • You need to minimize further damage.
  • Avoid maneuvers that bend or stress the penis.
  • Use lubricants.
  • Use Viagra and the like to minimize risk of intercourse with a soft penis (likely to induce trauma or bending).
  • If pain occurs avoid reinjury -- allow several weeks of healing.
I have no idea if any of this would work, but it's what I'd tell my younger self. Oh, and I'd tell him not to bother with the Vitamin E -- that was stupid.

It's easier to make recommendations about what urologists should do. They need to come up with a starting guideline on prevention of further injury, then do some case-control studies to see if it makes a difference. (Hard to study this, especially as funds are limited!).

Then urologists and primary care physicians need to educate men on how to respond to painful intercourse or penile injury, and start enrolling men in preventive programs before the disease progresses. It might not work, but it's worth a try.

If I see anything truly remarkable I'll add another post, but given the state of the art, and the fact that I'm past the prevention phase, I probably won't have too many more posts.

Maybe one every 3-4 years...


Unknown said...

Could you tell me your opinion on radiotherapy in treatment of Peyronie's?
By searching the literature I could find conflicting information.
On the one hand it can potentially be a very effective treatment with low risk (
On the other hand it may depend strongly on the skill level and experience of the radiologist.
The only risk is scarring which might in extremely rare cases result in erectile difficulties and impotence.
It also may also make later surgical intervention impossible. But this point is only relevant for people who want surgery. Another relevant article with a negative opinion:
I think radiation has a bad reputation for not very good reasons. Especially compared to the risks of surgery, which is a nightmare. But what is your opinion? Thanks!

Renlau Outil said...


I've just found your blog. Maybe three months too late! I have PD. I had surgery in November. It's early days still, I know, but so far I'm disappointed with the outcome. I'm guzzling up your archive and having lost of thoughts and ideas because of it, and dawning realisations. In the meantime, I wanted to say thanks. So interesting.

Also, I've just started a blog, it covers a range of mid-life issues, but one of them is dealing with PD. I've only written one pieces specifically about it so far, but am planning more to come:

Anyway, I'll stop nattering on.



hortenis said...

Hi renlau,

I'm still around, but busy with other things and resigned to life post-Peyronies (which is generally very full).

Good luck with your new blog!

Unknown said...

At age of 69 I got PD "over night". It has hardly progressed since but it has seriously deteriorated my prior intense sex life. I have of course searched literature and now found your blog, which is the most informative about the subject. I found the following in your blog about the genetics of PD:

"In Rome, Carrieri et al. (1998) performed a case-control study of 134 men with Peyronie disease and 134 male controls. Men who had undergone invasive procedures on the penis (e.g., urethral catheterization, cystoscopy, and transurethral prostatectomy) had a 16-fold increased risk of Peyronie disease, while a nearly 3-fold increase was observed among men who had genital and/or perineal trauma. ...

... Dupuytren contracture was found in 21% of cases and none of the controls, and 4% of the cases and none of the controls reported familial history for Peyronie disease.

Note that the key research on the genetics of Peyronie's was done twenty-five years ago, and yet it's omitted from most discussions of the disorder (I'll be adding it to Wikipedia.) I was very surprised by the 16-fold increase with urethral catheterization.

If I were a urologist, I would routinely ask prior to any urologic procedure whether the patient had any relatives with Dupuytren's contracture. If they did, I'd reconsider the need for the procedure. A 16-fold increase is enormous.

It's most likely that Peyronie's Disease is a pathologic reaction to common micro-trauma of the penile vasculature. Men who don't carry* the gene may develop small scars or non-significant plaques, men who carry the gene* develop plaques and pathologic scarring."

I had a hemicolonectomy and urethral catherization seven years prior the sudden apparition of PD. I have also
Dupuytrins in both hands (genetics is positive). Do you think the urethral manipulation could have the causal connection to my PD after so long latency period?