Highlights of Defining Peyronies Disease

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The following is a one-post compilation of posts from the Defining Peyronies Disease thread. Individual posts have been copied into this page and no grammar or wording has been changed from the original post; quotes have been placed around passages that were quoted from another post, as the code that places quoted passages in a gray box does not copy. Entire posts have been copied to retain the context of the original post. The posts are entered in chronological order from the top of the page to the bottom, so the oldest posts will be read first and the most recent posts will be read last. This IS a work in progress and will be added to and edited so check back often.


HAWK       « on: November 24, 2006, 11:22:33 AM » Quote  

This topic grew out of a very lengthy exchange that started somewhat off topic in the "Causes of Peyronies Disease" topic.    This will be the place to clearly state just what is and is not Peyronies Disease.  Here Peyronies Disease can be differentiated from congenital curvature and any other conditions that exist that may cause deformity of the penis.

Please note that in order to effectively communicate we must speak the same language with the same definitions.  While it is ok to speculate on what does and does not comprise Peyronies Disease we need to label such as speculation or as private definition.

All readers should keep in mind that in most cases this is a discussion by lay people attempting to discuss some highly technical information and break it down in a form we can understand.  Much of it probably fails to stand up to sound scientific scrutiny on several levels.  


Liam          « Reply #1 on: June 17, 2007, 11:33:29 AM » Quote  

"The fact of the matter is that the vast majority of men with Peyronies Disease have no other fibrotic diseases and the majority of men with other fibrotic diseases do not have Peyronies Disease."

Yes.  But, enough do to realize their is a relationship between these diseases/conditions.  It, also, implies Peyronies Disease is not just an injury.  It maybe the healing process gone haywire in response to an injury.

"You can write your own definition (which happens to conform to your personal experience) and define every one that is not just like you as having a heretofore unidentified 'Peyronies Disease like disease' ".

Definitions of peyronie's disease on the Web:

A plaque, or hard lump, that forms on the erection tissue of the penis. The plaque often begins as an inflammation that may develop into a fibrous tissue.

A deposit of scar tissue or plaque in the erectile tissue in the penis, sometimes causing painful and curved erections.

Curvature of the penis, usually during erection, caused by plaque (hardened or calcified tissues).

I said:

"I have also seen the description 100 times - plaque and pain and curve."

Its the same basic definition at every site including journal articles, studies, etc.

"When asked about those that resolve, you say -> That was not Peyronies Disease.  It was Peyronies Disease-like.
When asked how you know, your answer is -> because it resolved"

I have yet to see the elusive evidence of spontaneous resolution.  I hear about it like an urban myth.  There is no valid and reliable measure used.  So how can it be shown.  I would like to believe they happen and they may.  Until I see evidence, I will keep my working definition.  I admit they are assumptions.  But, they are based on observations.  Here is my thought process.  1) There is a very low reported spontaneous recovery rate (5-15%).  These are based on suspect observations.  Because there is no universally applied, objective diagnostic procedure used for identifying Peyronies Disease, there are some false positives.  There has to be some number. Five to Fifteen percent, I don't know.  False positives would spontaneously recover.   2) Other factors such as the skill of the physician, accuracy of the patient history, etc. would account for some percentage of false positives.  It has to happen.  I don't know the number.  Just these two factors put a serious dent in that 5-15% causing the 0% to be at least plausible.  

"I would readily embrace such a radical unsupported position if it were not so radical and unsupported."

My feelings about the 5-15% number .

BTW, if someone told me they had Peyronies Disease and they cured it by putting peppermint oil on the area, I would probably try it.  I'm not THAT stubborn  .  No atheist in a fox hole or something like that.

I do believe there are varying degrees of Peyronies Disease, of course.  

"One thing that bugs me about the issue of "plaque" is that there is no anatomic or physiologic definition of that term."

Tim, that is exactly my point.  There should be criteria.  But, there has to be something there to cause a bend.  And, the definition I used refers to the phenotypic expression of the disease/condition, naturally.  The histological differences point to (possibly) what most of us assumed;  There is a process/disease/condition going on that we can't see.  

The study raises the questions:
Did the histological changes cause the Peyronies Disease or vice versa?
Do some men without Peyronies Disease have these changes?
What were the changes?

Just something funny I noticed.  On the picture labeled "C", is the tissue on a toile coaster?


One other fleeting thought.  A man receives a severe laceration to the penis (ala Bobbit  ).  It heals and and forms inelastic scar tissue.  The penis bends.  Obviously not Peyronies Disease?  I bring this up to muddy the waters .  Are the traumas that cause Peyronies Disease only the ones that can't be seen?


George999    « Reply #6 on: June 17, 2007, 11:44:10 PM » Quote  

Hawk, I ALWAYS try to make sure that I stress to newcomers that they should be evaluated by a qualified physician.  And I really don't believe that anyone here has actively encouraged newcomers to try to diagnose themselves based on the posts on this site.  But having said this, you will have to admit that even physicians don't seem to agree on what constitutes Peyronies and what doesn't.  There have been more than one post where people have actually complained that they were told by one physician that they did NOT have Peyronies only to be told by another that they did.  I am not saying this as a put down.  In fact I appreciate your concern and your admonition.  But this IS the thread centered on causes of Peyronies and we really NEED to be able to brainstorm on this subject.  By your own confession even the pros don't known the answer to this.  If we are not free to speculate based on the meager trickle of information at hand, this thread would be pretty empty.  - George

PS - Perhaps there is a need for an official disclaimer on each thread to the effect that it is not the purpose of these discussions to attempt to diagnose Peyronies or any other affliction and that all enquirers should seek the counsel of a qualified medical professional.


Hawk      « Reply #14 on: June 18, 2007, 02:15:32 PM » Quote  


I sent you a pm about moving these out of this topic.

Peyronies Disease is scar tissue formation that has hyertropic or keloid characteristics and forms in the tunica or carevernosal chambers of the penis.  This scaring, plaque, fibrosis, over-runs and replaces healthy elastic penile collagen with cross linked or non-elastic collagen resulting in the many manifestations we all know so well.  While the geneses, and etiology of the disease is not fully understood, when HEALTHY tissue is replaced with non-elastic scar tissue, that is Peyronies Disease.    

Injury and other unknown factors can trigger this replacement of healthy tissue.

In contrast, when scar tissue is confined to the limited boundaries of an injury, that is just normal healing.  

I have reason to think Peyronies Disease is very under-diagnosed, rather than contending that a large number of Peyronies Disease diagnoses are in fact some other diseases.  If Peyronies Disease were truly over diagnosed then it would have a very negligible impact in terms of numbers and we better come up with a cure here because no one else will care.


Tim468       « Reply #15 on: June 18, 2007, 02:27:42 PM » Quote  


I think your problem is that you are being a bit rigid about how you define Peyronie's (and I think it is a problem, because you seem stuck on this point to the point of silliness, IMHO).

I think that this boils down to how physicians make diagnoses at all, ever. Typically, there are characteristics that help one make a diagnosis, and occasionally, there is a sine qua non that defines the disease. An example would be cystic fibrosis. This is a clinical disorder characterized by chronic lung disease and pancreatic insuffiency. The understanding of this disorder has grown by leaps and bounds (and FAR faster than the biologic understanding of Peyronies disease) because of the dedicated familes that keep pushing for a cure, and put their money where their mouth is.

But making a diagnosis is not so easy. That the seat test shows more chloride added to the testing repetoire - now we must see a seat test with a chloride over 60 to make the diagnosis.

Then we discovered the gene.

Then we discover more genes, and more, and more - now 2500 unique different genetic alterations that can lead to CF.

So how do we diagnose it? Well, the answer is by a gestalt assessment, with included data including the sweat test, and full genetic analysis. There are still patients that we see that have equivocal sweat tests, no identifiable genetic defect and we still follow them closely, perhaps saying "we think that you have CF, so we are going to pretend you do just to be on the safe side".

IOW, it is a clinical diagnosis. And as such, it has specific findings - but it is not required that all features be present.

For the sake of answering your argument, although I am not a urologist, I very much believe that any reputable urologist would identify the following men as having Peyronie's Disease:

1) a man with a 6 month history of painful erection, mild ED, a new deviation to the right at mid shaft with a palpable induration or nodule at the site of angulation.

2) a man with a 6 month history of painful erection, mild ED, a new deviation to the right at mid shaft without a palpable induration or nodule at the site of angulation.

3) a man with a 6 month history of painful erection, no ED, a new deviation to the right at mid shaft without a palpable induration or nodule at the site of angulation.

4) a man with a 1 year history of a (relatively) new deviation to the right at mid shaft with a palpable induration or nodule at the site of angulation.

5) a man with a 1 year history of a (relatively) new deviation to the right at mid shaft without a palpable induration or nodule at the site of angulation.

He would likely NOT make the diagnosis of Peyronies Disease with the following findings:

1) a man with a lifelong history of a deviation to the right at mid shaft with a palpable induration or nodule at the site of angulation (although he might strongly consider it, and wonder if the guy was too stupid to have noticed the change when it occured)(occasionally we see dumb patients).

2) a man with a 1 week history of a (relatively) new deviation to the right at mid shaft, painful erection without a palpable induration or nodule at the site of angulation (he might suspect that it will prove ultimately to be Peyronie's Disease, but hopeful that it a traumatic event that will heal completely).

3) a man with a history of taking vitamin E for two days and developing angulation that was severe, but had resolved by the time of clinic visit five days later.

4) a teenager with a "curve" to his erect penis (not sure when he got it) without any plaque palpable.

The point is that the diagnosis must make sense. It is rarely a requirement for a diagnosis to be made that all criteria must be present - only that no other diagnosis make sense.

To take care of a child with CF - a terrible disease with life-shortening implications - we never take the diagnosis lightly. We move heaven and earth to figure out if we are on the right or wrong track if we suspect it. Such is not the case for Peyronie's. General practioners ignore it, try to reassure, or make the diagnosis without thinking.

It is clear that as our understanding of Peyronies disease grows, we will grow in our understanding of how it works, and who is at risk. If a patient of mine has CF and no pancreatic insufficiency, I tell them they are lucky, not that they can't have CF (as one local PMD did).

I do not have any easily palpable plaque. But the new dent at the left base of my penis, which is painful on erection is due to Peyronie's Disease. Period. I am aware vaguely that it feels a bit thicker there when I palpate - but that is not so obvious as it is said to be in others. I also have a fine linear scar on my arm, and I cannot palpate any obvious scar tissue there with my eyes closed - but it's still there.

I would suggest not focusing so much on whether or not someone has plaque, because it is not useful. We hear planty of stories here that make no sense - a lack of plaque can hardly be used to filter out what we are hearing here or help us arnchair diagnosticians make any diagnoses at all.



Tim468     « Reply #42 on: July 27, 2007, 08:45:45 PM » Quote  

Dogmatic thinking serves no purpose. Black and white is rarely an accurate description of the world.

For instance, elastin and collagen are simply two biologic materials formed via processes that individually and together affect the stretchability of a tissue. It makes sense to talk about them because they are important. I am sure a biologist or researcher who worked with either would find out discussions simplistic and silly.

However, what they might not be willing to think about is (in simple terms) how simple measures might lead to changes.

We talk about the effects of the VED on collagen - we have no clue. In fact, scarred tissue may not budge, but adjacent tissue may instead stretch out more than baseline, so that the overall tissue is more distensable and thus the penis goes straight.

The fun thing about speculating is that we can argue without facts as to what the benefits we see sometimes are due to.



George999   « Reply #45 on: July 27, 2007, 10:28:08 PM » Quote  

Quote from: Tim468 on July 27, 2007, 08:45:45 PM
"We talk about the effects of the VED on collagen - we have no clue. In fact, scarred tissue may not budge, but adjacent tissue may instead stretch out more than baseline, so that the overall tissue is more distensable and thus the penis goes straight."

Tim, I think "no clue" is a little strong here.  I think there is plenty of evidence that physical forces on tissue can result in POSITIVE tissue remodeling.

Example:  Regular stretching exercises can cause tendons to become more flexible indicating improved elastin concentrations.

Example:  Regular exercise has now been shown to actually rejuvenate aging DNA in muscle tissue.  *PRETTY SPECTACULAR IN MY BOOK*

So there is significant evidence for such a process even though it is not proven in this case.

- George


Hawk     « Reply #60 on: July 31 at 07:27:04 AM » Quote  

For new members I want to make it clear we are talking about the onset of a curve that was never there, not a congenital curve that always existed (from birth or puberty) because of the hereditary structure of the penis.