My first post on this blog was written over eight years ago...

About this blog - July 4, 2007

I have Peyronie's Disease, also known as "penile induration" and sometimes informally called "bent nail syndrome". I've had it for about thirteen years, but an exacerbation a year ago took it from moderate to severe and effectively "disabling". 

This is not a common disease, but it's not as rare as you might think. It's not something men tend to talk about. I suspect the disease runs in my family since several male relatives have "Dupuytren's contracture", a related disorder -- but nobody talks about their broken organs. I think that's understandable. There's a reason this blog is published under a pseudonym. 

There's not much research into Peyronie's disease, and our knowledge of the disorder has progressed very little since the 1980s. There are no effective medical therapies, few clinical trials, no drug research, and the surgical treatments are nothing to brag about. There is lots of misinformation and a bit of exploitation....

...This blog is my personal perspective. I'm sympathetic to the desperation that drives people to "alternative therapies" (Vitamin E, alas, is now in that category), but I'm a science guy. So, no alternative therapies, none of the various scams, nada. No ads either.

I've had some measure of Peyronie's disease, for 21 years. I can't say I've moved on, more that life has carried me away. Between age and chance I have other health issues now, and of course there's the rest of life.  I don't have much more to say about Peyronie's disease, and I do have other things to work on.

So I don't think there will be much more on this blog. Looking back we haven't learned very much in the past few decades; in fact we haven't learned that much in over 240 years [1]. We know more about the mixed outcomes of surgical procedures. There are relatively new treatments with collagenases that may help with early disease. Traction devices, long considered a shady scam, may have a modest role.

We don't know the mechanism of disease. If I had to guess I'd say disorganized or dysfunctional healing following soft tissue injury, maybe withe a variable contribution of auto-immune disease. In this case the penis is the most vulnerable marker of a systemic disorder, and Dupuytren's contracture is another manifestation of disorganized healing. Maybe if we looked harder we'd find other examples. If the problem is really disorganized healing it will be extremely hard to prevent or cure the disorder.

We don't know how to prevent progression. If I could go back in time to my early injury I'd try early use of vaginal lubricants, some caution with sexual positions, and early use of erectogenic medications. I'm not aware of any research to support this however. I suspect if one is prone to Peyronie's the disease is going to progress but the rate of progression may vary. Some people do seem to stabilize or even improve.

I may be back here someday. I'll leave the blog open for now.

There's a lot to life. Carry on.

[1]"In 1743 Peyronie described a disorder characterized by induration of the corpora cavernosa of the penis. This condition is now referred to as Peyronie's disease." Wikipedia

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:

• Surgical Management for Peyronie's Disease. [World J Mens Health. 2013]. If I were considering surgery, I'd want to hunt down a copy of this one.
• A retrospective comparative study of traction therapy ... [J Sex Med. 2012]: Is there any other time in the history of medicine that a sleazy scam has turned into something almost mainstream?
• The clinical and psychosocial impact of Peyr... [Am J Manag Care. 2013]: Yes, it's a big deal.
• Pathophysiology of Peyronie's disease: 2002, so not new, but it's an interesting review.

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...

Apologies for missing real comments

Most the comments I get on this blog are spam, typically for mail order viagra. I did miss several quite valid comments though, and I've just fished them out.

The blog obviously hasn't been very active. This is not because my fairly severe Peyronies has gotten any better. I don't think that's going to happen. It's mostly because my life is generally full of things that are either good or very demanding, and because there really isn't much new to say about this disorder.

I will try to catch up a bit more though.

Review of medical treament - nothing new

I've not added much to my blog posts because very little is happening with the understanding or management of Peyronie's Disease. I try to post when I find something novel.

This article doesn't have anything new, but it's a good summary of the urologist's current medical approach (emphasis mine and I've reformatted for readability):

Medical Management of Peyronie's Disease. [J Androl. 2008] - PubMed Result

Peyronie's disease (PD) is a wound healing disorder in which a fibrotic plaque forms in the tunica albuginea layer of the penis. It clinically presents as any combination of penile pain, angulation, and erectile dysfunction (ED).

Recent studies indicate that PD has prevalence of 3-9% in adult men.

While the exact etiology has not been established, PD likely results from a predisposing genetic susceptibility combined with an inciting event such as microtrauma during intercourse. During the initial acute phase (6-18 months), the condition may progress, stabilize, or regress.

For this reason authorities recommend a more conservative treatment approach with a trial of oral and/or intralesional pharmacotherapy before surgical reconstruction is considered.

Oral therapies most commonly employed include tocopherol (vitamin E), and para-aminobenzoate (Potaba), with colchicine, tamoxifen, propoleum and acetyl-L-carnitine being used less often. There are a limited number of long-term placebo- controlled studies with these oral agents and for the most part, studies have failed to show a consistent beneficial effect.

Intralesional injection therapy for PD is more commonly being used as a first line therapy. The current standard of care includes injection with interferon-alpha-2b, verapamil, or collagenase.

Interferon-alpha-2b, in particular, has been documented in a large, multicenter, placebo-controlled study to show significant benefit over placebo in decreasing penile curvature, plaque size, penile pain, and plaque density.

However, intralesional interferon is associated with post treatment flu-like symptoms unless premedicated with a non-steroid anti-inflammatory agent. Other available therapies that have not consistently shown efficacy in placebo-controlled studies include corticosteroids, orgotein, radiation, and extracorporeal shockwave therapy (ESWT).

Surgery is considered when PD men do not respond to conservative or medical therapy for approximately 1 year and cannot perform satisfactory sexual intercourse...

Translating from the jargon I'd summarize this as:

1. Most treatments have been shown not to work and should be abandoned.
2. Interferon-alpha-2b injection may be worth trying in the acute phase, but be ready for side-effects. I'd recommend asking for an explanation of exactly how much improvement was found, and whether the improvement was age group specific. Interferon injections have been proposed for many problems and they are usually found to be ineffective. This would be more persuasive if there were solid physiologic reasons to think it should work.
3. The "wound healing" explanation is not confirmed. I suspect the cause varies with age of onset, and that there may be a common predisposition both to injury and to dysfunctional healing.
   

The article does not address how well surgery works, it's a medical review. Long term surgical outcomes have been mixed at best.

The take away is to consider the interferon but cautiously. We haven't learned all that much about Peyronie's in the past 10 years, but at maybe we're using fewer ineffective treatments.

Peyronie's Disease: Type I and Type II?

I've been thinking about the results of a very recent study of the natural history of Peyronie's Disease. I'm thinking the study suggests that there may be two types of Peyronie's disease, early onset (Type I?) and late onset (Type II?) with an age cutoff of 50.

Fifty is a special age. Throughout most of human evolution men did not live past fifty. Nothing is really designed to last that long; life much past fifty requires a cozy environment and, often, some medical care. So things that go wrong after fifty are often normal "wear and tear". That's a clue.

My guess is that Peyronie's after 50 is mostly a bit of bad luck. The course of late onset Peyronie's is relatively benign. Progression is limited. Symptoms may resolve. It sounds more like an unlucky tear or injury to a sub-optimal tunica albuginea than a true disease. It's a vulnerable structure, sometimes it's less well made, it can tear.

Early onset Peyronie's, developing before age 50, is another story. The disease seems to progress, and may do so without evidence of repeated trauma. This seems more like a pathologic process, a genetic disorder of fibrocyte perhaps.

They may be the same condition of course, or related conditions, but I suspect we'll learn more about Peyronie's if we study early onset and late onset disease separately. If we study them together, we may miss important signals in the noise.

Why the URL?

The url for this blog is "thebentnail.blogspot.com". This old colloquial name for "penile induration" (Peyronie's Disease) wasn't my first choice, but "peyronies.blogspot.com" and "peyroniesdisease.blogspot.com" were taken by "blogspot squatters".

So we go with the funny one.

About this blog

I have Peyronie's Disease, also known as "penile induration" and sometimes informally called "bent nail syndrome". I've had it for about thirteen years, but an exacerbation a year ago took it from moderate to severe and effectively "disabling".

This is not a common disease, but it's not as rare as you might think. It's not something men tend to talk about. I suspect the disease runs in my family since several male relatives have "Dupuytren's contracture", a related disorder -- but nobody talks about their broken organs. I think that's understandable. There's a reason this blog is published under a pseudonym.

There's not much research into Peyronie's disease, and our knowledge of the disorder has progressed very little since the 1980s. There are no effective medical therapies, few clinical trials, no drug research, and the surgical treatments are nothing to brag about. There is lots of misinformation and a bit of exploitation.

Although I'm a physician, I won't be dedicating my life to researching the disorder. I've got other commitments I have to follow. I would like, however, to spin something positive out of my affliction. I intent to contribute to the wikipedia page on Peyronie's, and to use this blog to help build that material. I will also market it a bit for those who might be interested in my own personal perspective.

This blog is my personal perspective. I'm sympathetic to the desperation that drives people to "alternative therapies" (Vitamin E, alas, is now in that category), but I'm a science guy. So, no alternative therapies, none of the various scams, nada. No ads either.