Thursday, December 3, 2015

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

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