Peyronies Society Forums

Special PDS Boards => Peyronie's Disease Resource Library => Topic started by: Hawk on November 24, 2006, 11:22:33 AM

Title: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on November 24, 2006, 11:22:33 AM
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 diferentiated 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. 

Caution, This is not a topic that new patients will find very helpful in treating Peyronies Disease.  If it gets to be a bit too much, move on to another topic.  ;)
Title: Re: Causes of Peyronie's Disease
Post by: Liam 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.

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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.
medicalcenter.osu.edu/patientcare/healthinformation/glossary/p.cfm

A deposit of scar tissue or plaque in the erectile tissue in the penis, sometimes causing painful and curved erections.
www.malehealth.com/HTML/B9_print.html

Curvature of the penis, usually during erection, caused by plaque (hardened or calcified tissues).
erection-disfunction.biz/glossary.html


I said:
Quote
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.

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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

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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. 

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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? :)

http://www.refertilisieren.de/literatur/penilecorporoplastik.pdf

One other fleeting thought.  A man receives a severe laceration to the penis (ala Bobbit :o ).  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?
Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 17, 2007, 04:10:07 PM
...I will keep my working definition.  I admit they are assumptions. 

I am pretty satisfied with that quote. While I largely disagree, I have no way of combating admitted assumptions.

Peace!  :)
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 17, 2007, 06:08:01 PM
Quote
While I largely disagree

Peace!   :)

Hawk,

If the world would learn this, think of all we could do.

Thanks for a good and spirited discussion!

Peace (to Tim and Old Man, too),

Liam
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 17, 2007, 09:43:29 PM
George, GMTA

George999
Quote
So what if Peyronies is to these underlying changes like a hip fracture is to osteoporosis?

Liam
   
Quote
Defining the Problem
« Reply #112 on: September 09, 2006, 09:13:54 AM » Quote Modify Remove Split Topic 

--------------------------------------------------------------------------------
For a while now, I have suggested different conditions that are often labeled as Peyronies Disease.  This is fine for a support group.  It is not proper, however, for the scientific community.

Although both may result in a bent penis, the cause and, thereby, the treatment are different.  Tim may correct my analogy.  A fall and osteoporosis may result in a broken bone.  Some of the treatments may be similar.  But, with osteoporosis, the underlying condition must be treated as well.   ****The break is analogous to the bend in the penis and the osteoporosis is the disease analogous to Peyronies Disease.****

This is nothing new.  We have known for a while some men spontaneously heal.  Maybe (probably?) its because the condition is not the same. 

We should not fear the truth.  We should welcome all men who have deformities of the penis.  We have more similarities than differences.  Just realize some may have a different condition.

Liam


This means sex is like a fall?  Somtimes I carry these things too far.   


It seems to fit so well ;)
Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 17, 2007, 11:07:21 PM
Guys,

I am on the verge of making myself sick so I fear others are sick of this.  nevertheless, I want to make it clear that I don't question that Peyronies Disease has some connection with other fibrotic diseases.  I certainly agree to underlying factors.  My personal guess is that Peyronies Disease occurrs when a combination of several unknowns are present simultaneously and that these unknowns, like TGFb1, have more than one simple trigger.  This means they have more than one way to break the critical combination.  My disagreement is for laymen whose expertise consists of having the disease to assume to define or diagnose who has Peyronies Disease and who has a yet unnamed Peyronies Disease-like condition.  The truth is that It is a fact that no scientist has yet nailed down any data to determine that any such Peyronies Disease-like condition with a clearly different origin (etiology) than Peyronies Disease even exists.  Until we research, discover, and document such a non-existent condition we may be  unwittingly leading people on a *snipe hunt.

Could it be? - SURE
Is there any basis - NONE

I can come up with a working definition of Peyronies Disease that will define Liam or anyone else out of having Peyronies Disease based on my expertise as a cop, and my private definition, for whatever that is worth.  My concern is that our random speculation my be very confusing because it creeps into posts that are sometime actually directed to new members who post with questions.  Heaven forbid that they may actually think we know what the hell we are talking about because nothing could be further from the truth.  It may be fun to speculate about "what ifs" but I think we need to put more warning stickers on such speculation than are plastered on a step ladder if we are going to be responsible.

Within those confines the discussion is somewhat interesting but it is almost a candidate for the "off Topic" area or a new topic called "Total Speculation"

*PS: For the uninitiated, a snipe hunt is a practical joke played on unsuspecting victims as they try to catch non-existent snipe at night using totally ineffective methods.
Title: Re: Causes of Peyronie's Disease
Post by: George999 on June 17, 2007, 11:44:10 PM
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.
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 12:25:13 AM
Liam - Amateur Diagnostician 8)
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 12:41:38 AM
What I say is for discussion purposes only.  Discussion involves speculations just as the scientific process involves speculations.  Just look at all the treatments we discuss and try.  My goal is not to disuade someone who may have Peyronies Disease from getting it checked out.  I only want to open the thought processes of interested members to the possibilty of conditions which may lead to false positives for Peyronies Disease.

If there is some new guy who thinks he might have Peyronies Disease, get it checked out by a urologist.  I would never try to tell an individual whether he does or doesn't have it.  And, they should not try to diagnose themself.

I have on occasion told guys what they had didn't sound like Peyronies Disease.  I always follow or precede with the advice to see a doctor.  And, those guys lists of symptoms matched nobody's definition of Peyronies Disease.

I honestly don't question the popular definition.  I just believe men are being diagnosed with Peyronies Disease who don't have the symptoms that define the disease.


 
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The truth is that It is a fact that no scientist has yet nailed down any data to determine that any such Peyronies Disease-like condition with a clearly different origin (etiology) than Peyronies Disease even exists.

  Here is something the authors of the paper called Atypical Peyronies Disease (yes, its a repost).  It kinda sort of has some of the syptoms but, not exactly.  Really its not even close.  Just dump it into the old catch-all called Peyronies Disease.  But, because it is really nothing like Peyronies Disease, just stick "atypical" in front of it.  Its like calling a sinus headache an atypical migrain.  They could have left it labeled ISS.  Thats a cool acronym.  But, noooooo! You know your in trouble after the introduction.

CASE REPORT
Nonpalpable Scarring of the Penile Septum As a Cause of Erectile Dysfunction: An Atypical Form of Peyronie's Disease
Anthony J. Bella, MD,**Department of Urology, University of California, San Francisco, CA;Anthony J. Bella, MD, Department of Urology, University of California, San Francisco, CA 94143–0738, USA. Tel: (415) 789–5109; Fax: (415) 476 8849; E-mail: abella@urology.ucsf.edu Alp Sener, MD,The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada Kirsten Foell, MD,The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada and Gerald B. Brock, MDThe Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada *Department of Urology, University of California, San Francisco, CA; The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada
Anthony J. Bella, MD, Department of Urology, University of California, San Francisco, CA 94143–0738, USA. Tel: (415) 789–5109; Fax: (415) 476 8849; E-mail: abella@urology.ucsf.edu
ABSTRACT
 
Introduction. Men with nonpalpable isolated septal scars (ISS) identified with color duplex ultrasonography (CDU) comprise a group of previously unrecognized patients with wide-ranging sexual concerns.

Aim. We aim to identify the clinical characteristics of patients presenting with this atypical form of Peyronie's disease characterized by the absence of palpable deformity.

Materials and Methods. Of 482 consecutive patients who presented to a tertiary care erectile dysfunction (ED) clinic and underwent CDU after satisfying inclusion criteria, 27 (5.6%) men with nonpalpable ISS and no dorsal or ventral plaque were identified.

Main Outcome Measures. International Index of Erectile Function (IIEF), CDU, and clinical characteristics.

Results. The median age of the men with nonpalpable ISS was 49 years. The length of time from onset of symptoms to presentation was 22 months, and the pretreatment IIEF score was 14. The remaining 455 men who underwent CDU were of similar age (48 years) but had a markedly lower IIEF score of 9.5 (statistical median). ISS patients presented with decreased penile rigidity (20), penile shortening (13), chronic pain with erection (13; mean 33 months), and the inability to maintain an erection (7). Fourteen men had failed phosphodiesterase-5 inhibitor therapy, and four reported unsatisfactory results. Management options included retrial with oral agents, intracavernous pharmacotherapy, verapamil injections, and surgery.

Conclusions. The clinician should be suspicious for nonpalpable ISS in men with sexual concerns who present with decreased penile rigidity, length loss, and chronic pain with erection. Our findings support the use of CDU for this patient group, particularly when previous treatment has failed, because men with ISS had a greater likelihood of having no palpable deformity or curvature and ongoing penile pain. Bella AJ, Sener A, Foell K, and Brock GB. Nonpalpable scarring of the penile septum as a cause of erectile dysfunction: An atypical form of Peyronie's disease. J Sex Med 2007;4:226–230.


Quote
We aim to identify the clinical characteristics of patients presenting with this atypical form of Peyronie's disease characterized by the absence of palpable deformity
  characterized by no plaque and no bend or characterized by none of the primary characteristics of Peyronies Disease.


You be the judge.  Is this a form of Peyronies Disease or not?  And, regardless of your answer, how sure are you?
Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 18, 2007, 07:34:51 AM
Liam,

I hope i am not misrepresenting you.  I used your quotes to determine just what you are saying and i am ..... well..hmmm..at a loss.

I honestly don't question the popular definition.  I just believe men are being diagnosed with Peyronies Disease who don't have the symptoms that define the disease.
Should that have read: I just believe men are being diagnosed with Peyronies Disease who don't have the symptoms that define meet my private definition of the disease?

Quote
Here is something the authors of the paper called Atypical Peyronies Disease (yes, its a repost).  It kinda sort of has some of the symptoms but, not exactly.  Really its not even close.  Just dump it into the old catch-all called Peyronies Disease.  But, because it is really nothing like Peyronies Disease, just stick "atypical" in front of it.  Its like calling a sinus headache an atypical migrain.  They could have left it labeled ISS.  Thats a cool acronym.  But, noooooo! You know your in trouble after the introduction.
So do I understand you to mean that you feel more qualified to determine whether it fits the medical definition than these urologists at respected universities?

For instance could I boldly say, or even meekly say " After a thorough exam Anthony J. Bella, MD, Department of Urology, University of California, San Francisco;  Alp Sener, MD,The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada;   Kirsten Foell, MD,The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada; and Gerald B. Brock, MD The Department of Surgery, Division of Urology, St. Joseph's Health Center, The University of Western Ontario, London, Canada all agreed that I met the basic list of criteria to be diagnosed with Peyronies Disease but Liam, Peyronies Disease patient of 3 years, PDS contributor, and interpreter for the deaf has concludes otherwise?  I am glad Liam helped me find out that I really have a different disease that only shares a few characteristics with Peyronies Disease so i can be better informed"
???

Liam, I have to lovingly and laughingly say "Who the hell are you to presume with your experience and credentials that these men with their combined experience and credentials either just don't get it or are grossly and deliberately negligent in their diagnosis and classification of a group of characteristics resulting in penile deformity?

Quote
You be the judge.  Is this a form of Peyronies Disease or not?  And, regardless of your answer, how sure are you?
MY ANSWER: A lot more confident than I am in your determination and classification of what the disease is NOT, and I am very satisfied to let others decide based on the presentation.

Keep in mind that an atypical nose is called that because it is a nose, not because it is a tumor on someone's a$$ that doctors are not sure about.  Most diseases have atypical representations of that disease, thus the term.
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 09:37:06 AM
My "private definition" is the same as any reputable definition on the internet.  Plaque leads to pain and curve.  I don't understand why this would be controversial.    ??? Plaque is the defining characteristic.  It is what causes the curve and pain.  Maybe it is hard to find in some.  If something else that resembles Peyronies Disease is causing problems, why would we want to label it Peyronies Disease.

My speculation that Peyronies Disease does not "spontaneously resolve" is an entirely separate issue.  I have stated this is speculation.  I hope we all speculate, discuss, and come to a better understanding through the process.  BTW, we all agree the 50% spontaneous recovery they used to say (and some doctors still believe) is wrong.

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Liam, I have to lovingly and laughingly say "Who the hell are you to presume with your experience and credentials that these men with their experience and credential either just don't get it or are grossly and deliberately negligent in their diagnosis and classification of a group of characteristics resulting in penile deformity?

My friend, I do not have the credentials and experience these researchers have.  What I have is the experience of reading.  Scars on the septum, without plaque is Peyronies Disease?   I guess they could be right and every definition of Peyronies Disease out there could be wrong. 

Here is another group discussing these lesions. 

 
Quote
Urol. 2007 Jan ;177 (1):179-83 17162033  [Select][Unselect] [Hide][Unhide] 
Isolated Septal Fibrosis or Hematoma-Atypical Peyronie's Disease? 
[My paper] William O Brant , Anthony J Bella , Maurice M Garcia , Kavirach Tantiwongse , Robert C Dean , Tom F Lue 
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms. 


I find their speculations theories  ;) conform to the standard definition.  IMHO, they make a sound case.  In saying it may be a "precursor lesion" they are saying it is not Peyronies Disease.  It is the lesion (septal fracture) that may precede Peyronies Disease (typical-appearing septal fibrosis).


These patients do not have plaque.  Most of the guys here are painfully aware they have plaque.  Treatment must be different for these two groups.  This is the whole point of my soapbox.  I don't really care about the name they call it.  I just want scientist to be specific.  Words have meanings.

Having said that, I know definitions change as knowledge increases.  I don't think that is the case here.


ON A SEPARATE NOTE (A sharp I think):)
After a quick search, I found three hits on conditions which could be mistaken (according to each report) for Peyronies Disease.  There were other references.  I post this as an FYI
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=7495125&dopt=Abstract[/quote]


http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8379702&ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum[/quote]

[
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=1569689&dopt=Citation[/quote]
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 11:04:18 AM
Quote
Urethral manipulation syndrome. A new case][Article in Spanish]


Amat Cecilia M, Romero Pérez P.
Hospital Comarcal Marina Alta, Denia, Alicante, España.

The so-called "urethral manipulation syndrome" is distinct from the other andrological conditions of penile deviation. Unlike Peyronie's disease, the urethral manipulation syndrome is always secondary to any type of endourological instrumentation of the urethra. The deviation is always ventral and no tissue structural changes are demonstrable by ultrasound. Diagnosis is based on inspection and principally on a previous history of endoscopic exploration. If the condition does not resolve spontaneously, treatment is by surgical correction of the deviation.

PMID: 8379702 [PubMed - indexed for MEDLINE]

This seems to be at least one case of trauma to the penis causing a curve (ventral) that is not labeled Peyronies Disease.  Why?  No Plaque (structural changes).
Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 18, 2007, 11:25:18 AM
So do you think that these urologist that referred to atypical Peyronies Disease may have actually been looking at a condition that you found in your three hits?  If you do think that, you show no confidence in these urologists that have a specific interest in Peyronies Disease and were in fact interested enough to contribute to the Peyronies Disease research you think should be done.  Their entire point was to accurately identify the characteristics of atypical Peyronies Disease.  These were not some yaahoo family doctor looking at a urethral stricture for 10 seconds and shrugging his shoulders.

If you do not think they were looking at a condition covered by one of your hits then it only muddied our discussion and took it off track.

Do you also think that part of the problem with these urologists researching the characteristic of atypical Peyronies Disease is that they lack of reading of internet definitions of Peyronies Disease?
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 01:37:26 PM
The three hits were FYI and not related to ISS study.  Sorry.  I guess I did not make that clear.  I will add "On a seperate note" before the three links.  I did say "I post this as an FYI.  That was my failed attempt to separate it from the rest of the discussion.  The symptoms from these are actually closer to Peyronies Disease than the ISS as desribed in the first paper I noted.


This is what the "atypical Peyronies Disease" researchers were studying. :)  The two groups were looking at the same thing.

Quote
Urol. 2007 Jan ;177 (1):179-83 17162033  [Select][Unselect] [Hide][Unhide] 
Isolated Septal Fibrosis or Hematoma-Atypical Peyronie's Disease? 
[My paper] William O Brant , Anthony J Bella , Maurice M Garcia , Kavirach Tantiwongse , Robert C Dean , Tom F Lue 
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms. 





Quote
Do you also think that part of the problem with these urologists researching the characteristic of atypical Peyronies Disease is that they lack of reading of internet definitions of Peyronies Disease?

I could speculate all day about the reasons the two groups reported differently.  But, instead, I'll explain the flaw I perceived.

The first group labeled their finding as a fact, "Nonpalpable Scarring of the Penile Septum As a Cause of Erectile Dysfunction: An Atypical Form of Peyronie's Disease" and "Aim. We aim to identify the clinical characteristics of patients presenting with this atypical form of Peyronie's disease characterized by the absence of palpable deformity."  They went in with the idea this was a form of Peyronies Disease.  A bias was introduced that flawed the study.
Quote
Their entire point was to accurately identify the characteristics of atypical Peyronies Disease.
Yes, that was the problem.  They should have identified the characteristics of septal scarring and left the speculation out.  It would have been entirely appropriate to include speculation in the "Discussion" portion of the paper.  For example, they could have said we believe this to be an atypical form of Peyronies Disease.

The second group stated their obsevation and stated theories.  Note the language used, "We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion."  also "We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis."


On a separate note:

Urethral Manipultion Syndrome only shows (in the context of these posts) it is possible for a trauma to cause curvature without causing Peyronies Disease.



BTW, IYO, What is the definition of Peyronies Disease that we should use?




Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 18, 2007, 02:15:32 PM
Liam,

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.

Title: Re: Causes of Peyronie's Disease
Post by: Tim468 on June 18, 2007, 02:27:42 PM
Liam,

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.

Tim
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 02:41:07 PM
What causes the bend if not plaque (palpable or otherwise)?

Also, when did this become MY definition?

Quote
General practioners ignore it, try to reassure, or make the diagnosis without thinking.

If you can say this, why am I being silly.  It makes my case.  As a matter of fact, as I reread your post, you say more to convince me of my view than you do to convice me I'm wrong.

I am at a loss (the people rejoice.....rah). 

Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 18, 2007, 03:48:27 PM
Liam,

I offered my definition of Peyronies Disease and you did not comment.

Just what do you see as the definition?
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 04:24:33 PM
I like your definition.

From Merck Manual -Online Medical Library

Peyronie's disease is fibrosis of the cavernous sheaths leading to contracture of the investing fascia of the corpora, resulting in a deviated and sometimes painful erection.

They all include the same things: 1) Plaque/fibrosis 2) deviation/bend 3) Pain   
But, its the fibrosis (whether you can feel it or not) that causes the deviation and the pain.  If you can feel the plaque, you can be pretty sure of what you've got.  If you can't, just do imaging until you're sure no plaque/fibrosis is there.  At that point, start looking for the real problem. 

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


I suspect non-progressive scars from penile fracture are being labeled Peyronies Disease.
Title: Re: Causes of Peyronie's Disease
Post by: Hawk on June 18, 2007, 04:35:43 PM
I suspect non-progressive scars from penile fracture are being labeled Peyronies Disease.

I very much doubt that for a few reasons:

1. Unless your last name is Bobitt, the degree of likely damage to the penis is very UNLIKELY to be so large that normal healing would cause significant deformity. 

2. It certainly would not be progressive

3. It would occur in such close association with the injury that there would be little mystery that your penis was ripped half off and now it has a stable bend.  Who would call that Peyronies Disease?


PS:  I am not at all certain that all fibrosis can be imaged.  Certainly blood flow can be imaged but non-palpable, non-calcified, fibrosis ???
Title: My last post in this discussion
Post by: Tim468 on June 18, 2007, 05:17:04 PM
The key factor is this: fibrosis may not be palpable, but present.

If one cannot feel it, or even image it, does not mean it is absent. For instance, one may not hear evidence of lung disease at all, an xray may be normal, and a pulmonary function test may be normal. Yet when one does a high resolution CT scan of the chest, it shows disease (see image).

The new ability to show disease does not meant that 5 years ago before ultrahigh resolution CT that such disease did not exist - we are just getting better at diagnosis.

My point is that no clinician would say "you don't have CF because I cannot SEE the proof of it", when we have other evidence that does show it is present.

I may not have PALPABLE plaque, but I have Peyronies.

Tim
Title: Re: The Iceberg
Post by: George999 on June 18, 2007, 06:04:38 PM
Tim, You are reminding me of the part about the practice of medicine being more of an art than a science.  It seems like that is still true even with all of our technological advances.  Trying to understand human affliction is, like discerning and iceberg, more about trying to understand what is going on under the surface than just taking at face value what we are seeing with our eyes.  And that is just one more reminder of how valuable doctors are in the process of diagnosis.  Thank you for once again bringing some valuable focus to this discussion.  - George
Title: Re: Causes of Peyronie's Disease
Post by: Liam on June 18, 2007, 10:41:22 PM
Quote
My point is that no clinician would say "you don't have CF because I cannot SEE the proof of it", when we have other evidence that does show it is present.

Quote
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".

So the doctor should say something like, "We see no evidence of fibrosis but, due to your other symptoms, we are going to treat you for Peyronies Disease"  I could live with that.  Yeah, like thats going to happen.

Quote
I may not have PALPABLE plaque, but I have Peyronies.

Quote
I am aware vaguely that it feels a bit thicker there when I palpate

The plaque is there and in significant quantity to cause a curve.  Imaging would show it.  Imaging shows ISS.

Your point is well taken not to rule it out.  But, on the other hand, don't be too quick to rule it in when there is no fibrosis evident.

-----------------------------------------------------------------------------------------------------------------
*Related to other portions of our discussions*
While reading up on Penile fracture, I ran across this:

Quote
Résumé / Abstract
Purpose: This study was performed to determine whether patients with penile fracture or a long history of forcefully bending the erect penis (taqaandan), as models of acute and chronic penile trauma, had an increased rate of Peyronie's disease (Peyronies Disease). Materials and Methods: The study included 193 surgical cases of penile fracture (average followup 85 months), 150 cases of long history of taqaandan, and 50 cases of Peyronies Disease. All 3 groups of patients were interviewed and physically examined. Results: Signs of Peyronies Disease were found in only 1 case of long-term taqaandan and in no case of penile fracture. None of the 50 cases of Peyronies Disease had a history of penile fracture. Conclusions: Severe, acute trauma of penile fracture and moderate, chronic buckling injury of taqaandan are not associated with later development of Peyronies Disease. These findings question whether the hypothesis that trauma, trauma-induced smoldering inflammatory cascade and aberrant wound healing are the main causes of Peyronies Disease. Alternative, plausible, evidence based explanations should be sought for the etiology of Peyronies Disease. Any theory on the etiology of Peyronies Disease should provide an explanation for total lack of occurrence of Peyronies Disease following the trauma of penile fracture.

Source: http://cat.inist.fr/?aModele=afficheN&cpsidt=15855323

Woah! How did I miss this until now?
Title: Re: Invisible plaque
Post by: Liam on June 19, 2007, 12:29:01 AM
Quote
If one cannot feel it, or even image it, does not mean it is absent.


But, how likely is it that its present.  I can't help but ponder, if it is not a sufficient mass to show up on imaging, how likely is it to present with symptoms.  I don't know the answer.  I imagine not very.


George,

I do appreciate the skill of a diagnostician (especially Tim).  I just prefer a more objective process.  I like my art from the museum (Not really.  My taste in art is watching old Rocky and Bullwinkle cartoons.) ;)
----------------------------------------------------------------------------------------------------------------
Not directly related to above discussion

Note "differential diagnosis" topic

Lue's book excerpt:

http://books.google.com/books?id=LW1fxcZmYyYC&pg=PA135&lpg=PA135&dq=differential+diagnosis+peyronie's&source=web&ots=ExlvH3NPqU&sig=4OeqNAs7ti0kt9yaJPw6J9HRZ_0#PPA135,M1
Title: Re: Objectivity
Post by: George999 on June 19, 2007, 01:30:54 AM
Quote
I do appreciate the skill of a diagnostician (especially Tim).  I just prefer a more objective process.

But Liam, I think the above is actually a very subjective statement.  Objectivity means that the diagnostician is free from the limitations of hard evidence and can actually deduce from a given set of circumstantial signs a rather reliable tentative diagnosis.  If you limit the doctor to hard evidence, you will actually miss a lot of afflictions that will then go untreated until they finally present, at which point it will be too late for the patient.  - George
Title: Re: Art of Medicine
Post by: Liam on June 19, 2007, 06:13:40 AM
George,

I have been misdiagnosed three times (that I know of).  One of them could have had fatal consequences.
My former doc told me, "your prostate is a little large, nothing to worry about".  That was a subjective statement.  He should have biopsied (an objective test). 

My dad died from colorectal cancer.  The doctor (bone) told him he should learn to live (he could not lie down and had to sleep sitting up) with pain because he was getting older. This is another subjective statement.  My dad also presented with a change in bowel habits.  The doctor should have referred for a colonoscopy (objective).

In each case, the symptoms were there.  The tests were there.  If the doc had followed the road map in front of him instead of trying to fit my dad in a pigeon hole, my dad might have survived.

This was where I was coming from.  Now, I am all about running tests and ruling out

So, I think we are describing the same process after all.  In the immortal words of Gil Grissom (CSI), "follow the evidence" :)
Title: Re: Technology ...
Post by: George999 on June 19, 2007, 11:51:20 AM
Liam, I couldn't agree more with you on this.  My point was rather in the other direction in the sense that just because the objective tests FAIL to indicate a specific health condition, that DOES NOT mean that that condition should be ruled out.  If the doctor has a gut feeling that something is going on, he or she should be acting appropriately on that gut feeling.  In this regard, I agree completely with Tim's guidelines on Peyronies.  When I said that medicine is more an art than a science, I was not meaning to infer that physicians should ignore the science, but rather apply the science to confirm the art.  But, in reality, the art, not the science is the leading edge.  If it were not, you would have doctors blindly running one test after another in order to detect abnormalities.  And that is simply not the way medicine is performed.

On the other hand, where there is a deformity in erections that appears suddenly out of nowhere, the lack of palpable plaque DOES not rule out Peyronies no matter what you might imagine.  And I think those are the kind of subjective, speculative statements some of us are taking issue with.  - George
Title: Re: Defining Peyronies Disease - Moving On
Post by: George999 on June 19, 2007, 12:00:32 PM
In defining Peyronies Disease, I think we also have to differentiate between frank Peyronies Disease and the apparently precipitating underlying histological issues that Tim touched on.  This is sort of like differentiating between in situ and cancer.  In reality,  for successful treatment to occur, both the histology AND the Peyronies Disease must be addressed together ALONG with whatever might be instigating the histological issues.
Title: Re: Palpable
Post by: Liam on June 19, 2007, 12:15:23 PM
Palpable seems to be the word that is the sticking point.  Maybe the word "findable" would be more correct.  Why would any of the symptoms happen if there were not plaque/fibrosis (that could still be considered Peyronies Disease)?  So far nobody has addressed this question.

Does anyone have any thoughts on the "penile fracture not leading to Peyronies Disease" abstract in an earlier post?
 
Quote
Alternative, plausible, evidence based explanations should be sought for the etiology of Peyronies Disease. Any theory on the etiology of Peyronies Disease should provide an explanation for total lack of occurrence of Peyronies Disease following the trauma of penile fracture.
Title: Re: Other Peyronie's-Like Conditions
Post by: Liam on June 19, 2007, 12:28:29 PM
Excerpt:

Quote
Classical Peyronie's disease may be differentiated from localised cavernous fibrosis due to direct external trauma to the corpus, injury from a fractured penis, or damage to the cavernous tissue from intracavernous injections. Atypical areas in the crura are probably due to external trauma.

Source:  http://www.blackwell-synergy.com/links/doi/10.1111/j.1743-6109.2004.10116.x/full/

Title: Re: Palpable/Findable
Post by: George999 on June 19, 2007, 01:17:08 PM
Liam,  Once we come to the point where we understand that the Peyronies process begins with abnormal Tunica tissue in the first place, we then have to understand that any trauma, however minor or insignificant, can start the process of fibrosis.  In fact, the degree of susceptibility to Peyronies might well hinge on the degree of histological change in the tunica with more change causing one to be more susceptible to injury.  Thus, I think it might also be helpful to realize that that underlying histological 'change' or 'abnormality' is probably not like a '0'/'1' digital state, rather it is likely that is is more analog in its development, with small changes potentially proceeding larger ones.  And once you combine this with some sort of stress or trauma, the resulting fibrosis is likely not in '0'/'1' form either, but is likely to range from mild to severe.  And increasing fibrosis would make the tunica in the area of that fibrosis incrementally stiffer as the fibrosis progresses.  The definition of Peyronies, in my mind, would occur at the point where there becomes a definable deformity in erection that was not present previously that is attributable to the underlying fibrosis.  At some point that fibrosis might result in a progressive discernible thickening of the tunica.  But it is entirely possible if not likely that a mild fibrosis that is capable of instigating a deformity might well not cause any discernible/detectable/imagible thickening of the tunica.  Remember, it would merely require enough loss of elastin in the tissue to compromise its ability to stretch to its full size and that might not be a whole lot of change.  But at the other end of the spectrum, the tunica might become affected to the point of becoming downright leathery in its consistency, making Peyronies an easy diagnosis.  On the other hand, my observation has been that the fibrosis process can cause plaques that do not result in any noticeable deformity in erections.  They are simply abnormal accumulations of collagen that refuse to break down in normal manner and are very palpable but have little or no effect on the process of erection.  Is this condition Peyronies?  You tell me.  I suspect not, and yet the underlying problem is still the same and most physicians would immediately diagnose this as being Peyronies.  In short, I really suspect that a large part of this problem is that we are simply not dealing with black and white here, but rather with a huge range of grayscale that can be rather unsettling to those who are looking for simple answers.

As for Penile fracture causing Peyronies, I would suspect that that would be completely dependent on the underlying histological process that Tim referred to.  In the presence of those underlying histological changes, it would seem that penile fracture would indeed 'cause' Peyronies, whereas in their absence, Peyronies would be unlikely and completely healing would likely occur.  - George
Title: Re: George - Amount of plaque and circumscribed septal lesion
Post by: Liam on June 19, 2007, 03:23:44 PM
I can mostly agree with you.  Some "grow" more fibrosis/plaque than others.  It is the fibrosis that differentiates Peyronies Disease from some other condition causing deformities of the penis.

I am intrigued by the numbers though.  I keep going back to this study.  I'm going to copy it again for convenience.

Quote
Urol. 2007 Jan ;177 (1):179-83 17162033  [Select][Unselect] [Hide][Unhide] 
Isolated Septal Fibrosis or Hematoma-Atypical Peyronie's Disease? 
[My paper] William O Brant , Anthony J Bella , Maurice M Garcia , Kavirach Tantiwongse , Robert C Dean , Tom F Lue 
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms. 


forme fruste - An incomplete or abortive form or manifestation of a condition or disease.
circumscribed - bounded or limited; confined to a limited space.
precursor In clinical medicine, a sign or symptom that heralds another

approx. 650 = number of men seen for Peyronies Disease
47/650 = 7.23% Total circumscribed septal lesion
22/650 = 3.38% Curve but no palpable plaque (my interpretation -verify for yourself)
16/650 = 2.26% No curve
07/650 = 1.07% Penile shortening or focal lack of rigidity
You can look at the other numbers.  I wish I could see how the numbers overlap.

Circumscribed septal lesion sure describes the group we've been discussing.  It seems to fit what everyone on this topic has been saying!  As silly as that might seem. ;)
Title: Re: Defining Peyronies Disease
Post by: Hawk on June 19, 2007, 10:04:32 PM
Liam,

I may be getting old but if we were standing face to face having this conversation, this is where I would say, "so whats your point"?  It seems like you are grasping at straws to establish some very vague point.

From the literature I have read, even the "experts" disagree upon when a condition is or is not diagnosed as Peyronies Disease.  Does it really matter what percentage of fractures turn into Peyronies Disease?  Does it matter what percentage of DC patients get Peyronies Disease?  We know there is a connection.  That was never meant to imply they are inseparable.  It may matter from a standpoint of interest but certainly not from a standpoint of definition or who really has Peyronies Disease and who doesn't.

I was interested that the link you posted also made some other interesting (and questionable) points, many which run counter to the positions you have taken.  Here are a few:

The literature is devoid of robust epidemiologic studies ...

The data available suggest that the incidence of Peyronie's disease (as defined by a plaque) is higher than previously thought.

The prevalence... depends upon the definition and the means of detection. 

The pathophysiology of Peyronie's disease remains poorly understood and is considered to be multifactorial with the interplay of a genetic predisposition, trauma and tissue ischemia.

It is likely (but not certain)that the final common pathway involves fibrogenic cytokine induced fibrosis in the tunica albuginea. 

A history and examination are usually sufficient to make the diagnosis and further investigation is only necessary in selected patients.
 
There is a high chance of spontaneous improvement in men with untreated Peyronie's disease. ...a 10–82% improvement in angulation with time.
Title: Re: The Point
Post by: Liam on June 20, 2007, 08:32:12 AM
This whole discussion centers on my assertion there are men with symptoms similar to Peyronies Disease without actually having the disease.  Said a different way, there is a significant number of men who have been diagnosed with Peyronies Disease who really don't have it.  The several references I've posted make at least a prima facie case for this.

Quote
Does it really matter what percentage of fractures turn into Peyronies Disease?
 

Only that it shows trauma alone does not cause Peyronies Disease.  Not everyone believes this.

Quote
Does it matter what percentage of DC patients get Peyronies Disease?  We know there is a connection.

Thats how we know.

Quote
It may matter from a standpoint of interest but certainly not from a standpoint of definition or who really has Peyronies Disease and who doesn't.

If the two are related and if they are both fibrotic conditions, men without fibrosis could only be diagnosed with Peyronies Disease if people with non fibrotic constrictures of the hand could be diagnosed with Dupuytren's.  Also, if you have Dups and then you start getting a bend in the penis (or vice versa), you have a good indication of what the diagnosis is.  I read at least on article (seems like it was for ER docs) that said if the patient presented with Peyronies Disease symptoms, check the palms for Dups.  Other than these loosely related items, I don't maintain, nor have I ever maintained, there is any relevance to diagnosis.

The link  ( http://www.blackwell-synergy.com/links/doi/10.1111/j.1743-6109.2004.10116.x/full/ )
is interesting. 

Quote
A recent review of the literature [7] found that there was a 35–100% improvement in pain, 11–100% improvement in plaque size, and a 10–82% improvement in angulation with time
.

I agree, that is what the literature says.  Actually, I could claim improvement.  My "turtle effect" was eliminated. My condition, however, is worse.

Quote
A history and examination are usually sufficient to make the diagnosis and further investigation is only necessary in selected patients.

It seems to me, the selected patients to which they refer are the *subset of patients (47/650) that don't have identifiable plaque/fibrosis. (*see my previous post).

So far, I have presented several pieces of evidence for my point of view.  I would like to see any evidence, for Peyronies Disease without identifiable plaque, showing it is, indeed, Peyronies Disease.

Now let me say gain for the record.  As a support group (we are that of sorts and much, much more) I don't care about the reason for your problem other than for you to get proper help.  A man with a bent penis really just wants things better.  I do.

I care about this issue because I believe it is important to understand what a disease is. ::)  OK, that sounded really obvious.  Why would we not question and theorize and ponder.  Why is it silliness?  Is it a "blasphemy", of sort, to ask if this small group of men who who don't have verifiable plaque/fibrosis might have something else.  Why would I even care?  Because you have to know what the problem is before you can fix it.  The two "atypical" studies have at lest recognized this group is out there and their needs are different.
Title: Re: Liam - Defining Peyronies Disease
Post by: Hawk on June 20, 2007, 09:23:28 AM
Liam,

I think I am losing interest in this point / discussion.  I have the following impression.  I think your question is relevant.  I just think you are presuming things that we are far from having answers to.

I conclude you are more convinced than the evidence warrants and you are running all evidence through a filter that supports your point.  If something supports it you weight that remark/study as very weighty.  If a scrap of evidence casts doubt, you zip by it on the way to another piece of supporting evidence.  Now, I could be wrong, but that is the impression I am left with.  I am unmoved by your argument since it appears to me like cherry picking.

I soundly agree that trauma absent all of the other factors that produce Peyronies Disease, would not produce Peyronies Disease.  I feel there has long been the acknowledgment here (with no contrary point of view) that several factors must be present to initiate Peyronies Disease.  I also think that no one in the research or medical community pretends to know all those factors much less all the switches that turn those factors on or off.  I think that many of the complex interactions of those factors with other body processes (both good and bad) are also a mystery.

As a result of the points in this last paragraph, I conclude it is presumptive to state either of the following False statements.

1.  All Peyronies Disease with clearly identifiable palpable plaque has the same etiology and therefore similar treatment.

2. Peyronies Disease-like symptoms with no detectable plaque (even with imaging) have their own unique etiology and can be clearly classified as NOT being Peyronies Disease.


While broken penis, DC, and other patient history may give clues, it does not establish the specific processes going on in that man's penis since we don't even know the process going on in the most classic case of Peyronies Disease.  It therefore seems very presumptive to me to declare such artificial divisions of Peyronies Disease /Peyronies Disease-like especially when it is declared by a person with no background in medicine or medical research.

Now, clearly a person with an extensive research background can choose to define Peyronies Disease as they prefer based on some subset of symptoms. Clearly, such a definition will move men in or out of that group but that does not mean the definition is anything but that person's artificial description.  It ignores issue such as common etiology and treatment.  Both etiology and treatment remain largely unknown or we would not be here.

I do think it is very safe to say athlete's foot, restless leg, and congenital curve are not Peyronies Disease because they are clearly understood conditions that exhibit none of the key processes common to Peyronies Disease. 
 
Title: Re: Hawk - Case Made
Post by: Liam on June 20, 2007, 10:22:12 AM
Hawk,

Your cherries are my plums ;)  To my satisfaction, I have presented two cases indicating a subset referred to by some as "atypical" Peyronies Disease which by the authors assertion are devoid of the classical appearance of Peyronies Disease.  One of the papers suggest it may be a precursor and state the condition is "circumscribed". 
Quote
It therefore seems very presumptive to me to declare such artificial divisions of Peyronies Disease /Peyronies Disease-like especially when it is declared by a person with no background in any form of medicine or medical research.
   I posted these because they are medical researchers.
Quote
Now, clearly a person with an extensive research background can choose to define Peyronies Disease as they prefer based on some subset of symptoms. Clearly, such a definition will move men in or out of that group but that does not mean the definition is anything but that person's artificial description that ignores issue such as common etiology and treatment.
  This group did theorize on a common etiology by the terms "form fruste" and "precursor lesion".

BTW, What makes their description "artificial".  It seems they wrote what they observed.


I ammended the following trying to keep an open mind.


I conclude it is presumptive to state either of the following False statements.


1.  All Peyronies Disease with clearly identifiable palpable plaque has the same etiology and therefore similar treatment.

1b. All Peyronies Disease with clearly identifiable palpable plaque do not have the same etiology and therefore similar treatment.



2. Peyronies Disease-like symptoms with no detectable plaque (even with imaging) have their own unique etiology and can be clearly classified as NOT being Peyronies Disease.

2a. Peyronies Disease-like symptoms with no detectable plaque (even with imaging) do not have their own unique etiology.

Quote
I think I am losing interest in this point / discussion.  I have the following impression.  I think your question is relevant.  I just think you are presuming things that we are far from having answers to
.

I feel I have successfully presented and defended my case.  I will refrain from initiating any more discussion on the topic.  I will, however, respond to any posts as needed.



Title: Peyronies Disease?
Post by: whygodwhy on July 25, 2007, 05:53:35 PM
im not sure if i have Peyronies Disease

I curve slightly under 15 degrees left and 20 degrees downward
there's redness along the underside of the shaft in the direction that it curves

but it is not hard or raised
I don't have any pain either

is this still considered a "plaque"?
its my understanding that to have Peyronies Disease you have to have a plaque

I had an ultrasound and they said there was no Calcified plaque (not sure if that means there was no plaque) but they said there was scar tissue
which makes sense since I used to have straight erections

is this peyronies?
what's the difference between plaque and scar tissue?
im not sure if i have plaque so im not completely sure if i have Peyronies Disease, but i think i do.  I want to be sure before i make efforts to try and dissolve a plaque that is actually just scar tissue, and so i can go about the best method of treatment

Title: Re: Plaque v Scar Tissue
Post by: George999 on July 25, 2007, 08:19:51 PM
whygod, sounds like you DO have Peyronies.  I would not get to concerned about how to differentiate 'plaque' from 'scar tissue' since even the docs don't seem to be able to agree on that one.  Suffice to say that not all scar tissue is created equal and Peyronies scar tissue probably displays some degrees of variation.  I wouldn't worry about that part.  Scar tissue or plaque, you should probably be more concerned about getting started with some appropriate treatment.  Topping the list:

1.  Make sure your diet and lifestyle are healthy - especially in terms of using non-inflammatory oils and fats instead of inflammatory ones.  Make sure your weight is healthy, avoid the kinds of things that trigger metabolic syndrome and insulin resistance.

2.  Full spectrum Vitamin E with all 8 tocos.

3.  Pentox if your doc will prescribe it for you.  Best Peyronies drug currently available and its generic and real cheep.

4.  Arginine.  SAN VasoFlow is just about the best out there in my opinion.

5.  Horny Goat Weed or Viagra or Cialis if you can get it.

6.  Last but not least, VED AFTER the inflammation is passed.

7.  Lots more on this forum that you can try, but the above list contains the heavy hitters in my perception.  Others will supply what I left out I am sure.  Your in a good spot right here to find the help you need.

- George
Title: Re: Defining Peyronies Disease
Post by: Liam on July 25, 2007, 09:45:07 PM
John Bobbit has scar tissue not Peyronies Disease.

You said you've had this for 10 years.  If there has been no change in 10 years, its probably NOT Peyronies Disease.  How old are you now?  I'm guessing early twenty-something?  It is SO rare to get Peyronies Disease at that young age.

BTW, Any response here, including mine, is speculation.

Liam

Also, George's recommendations are under the category "BETTER SAFE THAN SORRY".  THey can't hurt.  And, if you have Peyronies Disease, they may help.
Title: Re: Collagen, Elastin, etc.
Post by: Hawk on July 27, 2007, 05:40:27 PM
I really think that one thing that confuses a lot of people is the tossing around of terms like "plaque" and "scar tissue"....

Lumps occur when there is an almost tumor like process going on that results in an accumulation of collagen.  These lumps, in and of themselves, though abnormal and definitely not desirable, are not the cause of the deformities although they may or may not coexist with the deformities.  The deformities are actually caused by another process.  This is the process whereby collagen and fibrin displace elastin in the tissues.  Thus a person can have a significant sized "plaque" and exhibit little or no deformity as long as the localized tissue retains sufficient elastin.  On the other hand, there may be no lump at all, but if the tissue is depleted of elastin, there will be deformity.  In some cases, both conditions are concurrent.  When you treat such a condition with the objective of getting rid of collagen, the result will be that the lump will disappear, but since the remaining tissue is elastin deficient, it still refuses to stretch, which results in the deformity remaining.  This is one huge problem I see with the collagenase approach.  If whatever strategy proposed does not take into account the rejuvenation of elastin, it will be of no use in eliminating deformity.

- George

George,

I speak as a member whose personal nature is to always look for holes in bold absolute statements unless they are supported with facts on a point by point basis.  I have to wonder what a Peyronies Disease specialist or researcher might think when reading your explanation.   I suspect they may chuckle to themselves and that they may be able to shoot holes in many of the individual statements.  The problem is that you are intelligent and articulate enough to convince many people that your use of collagen vs elastin, or your dividing up the processes as two separate processes, are proper.  While this may be a working description to make a point, I doubt these are an accurate description of Peyronies Disease.  It is my opinion that if we strictly accepted some of these points we would find ourselves having to unexplain them down the road.  We of course have no way to research these ideas.  We can not even produce theories but are forced to speculate with fragmented evidence. 

Your posts are usually cautiously sprinkled with warnings of: "personal opinion" and other disclaimers but many people probably still suspect you may have more facts to support these theories that you do have.  It is clear that some take this information, ask not one question, and await further advice on how to act based on this information.  Speaking as one member, I certainly do not want to see such well thought out expression suppressed, but I do want to keep it from going unquestioned.  Your understanding certainly varies from mine.

Somewhat aside from this, you have the ability to work on an in-depth post about your understanding of Peyronies Disease complete with documenting the basis for your understanding.  If you ever decide to undertake such a project I am sure it would find a topic on the forum for full discussion. ;)
Title: Re: Collagen, Elastin, etc.
Post by: George999 on July 27, 2007, 06:15:19 PM
Hawk,

Feel free to shoot away at my posts as much as you see fit.  Don't worry, I don't take offense.  As for the collagen/elastin issue, I gather from the research I have seen that both elastin deprivation AND collagen accumulation are known characteristics of Peyronies.  Would you accept that statement?  From that, it becomes my speculation that these two characteristics are not hard linked because only that type of relationship could account for the type of behavior that I have personally observed in my own case.  I have seen palpable plaque which does not result in deformity during erection.  I have also seen deformity with NO palpable plaque but only a certain hardness in the localized area of the tunica during erections.  I would openly admit that I have no research to back up this speculation.  I would certainly like to see research in this direction, but I am not sure it would justify the investment since it probably would not contribute the kind of knowledge that would facilitate a cure.  But it certainly is helpful in understanding why elimination of palpable plaque is not the be all and end all of Peyronies treatment.  And even some doctors seem to think that the whole goal is to eliminate the palpable plaque.  Once they can't feel anything any more, you're cured, even if you do still have a 90 degree bend.  But if you have any research that disputes ANYTHING that I say, please point it out.  I have been wrong more times than I can count and you won't so much as ruin my day if you prove me a liar one more time.  I am very willing (in fact anxious) to learn and will be grateful for any contrary information you can provide.

Respectfully,

George
Title: Re: George & Liam
Post by: Hawk on July 27, 2007, 08:36:36 PM
"Why"

Well it looks like one thinks you fit the definition of Peyronies Disease and one thinks you do not.


Liam - I reject your criteria for Peyronies Disease.  You started by expressing the fact that if it gets better that it can be assumed it was not Peyronies Disease.  Now you seem to expand that to say that you think if it ever stabilizes that it was not Peyronies Disease.

Who in the medical community supports that view?  While that is a bit of a rhetorical question I know you will feel free to answer if you find someone that does.  ;D
Title: Re: Defining Peyronies Disease
Post by: Tim468 on July 27, 2007, 08:45:45 PM
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.

Tim
Title: Re: George - Collagen, Elastin cont.
Post by: Hawk on July 27, 2007, 09:24:04 PM
George,

while this discussion may take more energy and time than I have, here goes.

My understanding:

1. Almost every tissue in the body is made up of one of the many forms of collagen.  There are dozens of types of collagen.  We seemed to get away from specifying the type I, type II, type III (types of collagen worth discussing) when discussing collagen.  We over generalize and simplify the collagen issue to the point of being erroneous.  This for instance this why generally suppressing collagen would never work (as I know you understand).  I think it is correct to say elastic is only a component of collagen type II (I actually think type II is a componet of elastin).  This means to say that "lumps" are NOT the the accumulation of collagen as much as they are the replacement of one type of collagen with another.  They are most like "lumps" in the immature stage of inflammation and shrink as they mature.

2. Plaque when used in conjunction with Peyronies Disease (as opposed to arteries or teeth) is a term that is synonymous with hypertropic scar tissue.  In other words it is scar tissue (type III possibly changing to  type I) that over-runs healthy tissue which is made up of type II collagen.  Normal scar tissue stays within the bound of wounds.  This makes plaque/scar tissue VERY similar in many respects to keloids.  All of this is somehow driven by transforming growth factor 1 (TGF-B1) and prostaglandin E1.

3. Peyronies curve is caused only by plaque, ie. scar tissue.  If all plaque is eradicated, including non-palpable plaque, than all deformity is eradicated.  It is important to point out that curve is caused by plaque replacing healthy tissue in one side of the tunica.  If plaque is on opposing sides there will be a size reduction but possibly no curve since both sides of the tunica are shortened about equally.  A curve reduction can result from disease progression to the opposing side of the tunica.



PS: I see Tim posted while I was typing this and I concur that general absolute statements are simplistic and almost always impossible to defend which is one reason I always try to identify and challenge them.
Title: Re: Hawk - Collagen, Elastin cont.
Post by: George999 on July 27, 2007, 10:12:54 PM
Hawk,

Allow me to make a few comments here.

  We over generalize and simplify the collagen issue to the point of being erroneous.  This for instance this why generally suppressing collagen would never work (as I know you understand).

I agree completely.  We can try to identify all of the components of "plaque" and try to eliminate them from our diet (if we were to ever be successful we would starve ourselves to death) until the cows come home, but *the problem is NOT COLLAGEN*.  *The problem is HOW THE BODY METABOLIZES COLLAGEN.*  Its not the components, its the process.  And only by fixing the process will the problem get solved, not by trying to do hocus pocus with the components.


I think it is correct to say elastic is only a component of collagen type II (I actually think type II is a componet of elastin).  This means to say that "lumps" are NOT the the accumulation of collagen as much as they are the replacement of one type of collagen with another.  They are most like "lumps" in the immature stage of inflammation and shrink as they mature.

From what I have read Elastin is quite distinct from Collagen.

See: http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=115435

(Don't get me going on Vitamin C here, that isn't my purpose.  Remember the problem is the process, not the components or trivial environmental factors.  My purpose in citing this reference is that it distinguishes collagen from elastin to the point of differentiation, in this case, pertaining to the effect of Vitamin C.)

And: http://en.wikipedia.org/wiki/Elastin

Note that the main components of Elastin are "the amino acids glycine, valine, alanine, and proline" while Collagen is much more complex, but I find no references that indicate that collagen contains elastin.

Peyronies curve is caused only by plaque, ie. scar tissue.  If all plaque is eradicated, including non-palpable plaque, than all deformity is eradicated.

I would not argue that elastin depleted tissue does not consist of plaque.  As I stated in my original post, doctors can not even agree on the what constitutes generic scar tissue as opposed to plaque.  The point is that abnormal tunica tissue, whatever you want to call it, can occur as lumps or be palpably invisible.  It takes different forms.  It is the accumulation of plaque that causes the lumps and it is the depletion of elastin (which is distinct from collagen) within the abnormal tunica tissue that causes the lack of elasticity that, in turn, causes the deformity.  AND various levels of elastin depletion can occur within plaque.

- George

Added note:  Collagen is what gives tissue strength, while elastin is what allows it to stretch.  In the case of abnormal tissue commonly referred to as scar tissue or plaque, the tissue tends to be depleted to some degree of elastin, in some cases becoming almost totally collagen.  While even normal Collagen is quite pliable, in the case of abnormal Collagen, it not only loses the elastin that normally accompanies it, but it itself becomes atrophied and inflexible.  So there are actually more than one underlying processes that contribute to the lack of flexibility in the affected tissue.
Title: Re: Tim - Defining Peyronies Disease
Post by: George999 on July 27, 2007, 10:28:08 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
Title: Re: Hawk - Collagen, Elastin cont.
Post by: Hawk on July 27, 2007, 11:16:16 PM
I think it is correct to say elastic is only a component of collagen type II (I actually think type II is a componet of elastin).  This means to say that "lumps" are NOT the the accumulation of collagen as much as they are the replacement of one type of collagen with another.  They are most like "lumps" in the immature stage of inflammation and shrink as they mature.

From what I have read Elastin is quite distinct from Collagen.

Added note:  Collagen is what gives tissue strength, while elastin is what allows it to stretch.  In the case of abnormal tissue commonly referred to as scar tissue or plaque, the tissue tends to be depleted to some degree of elastin, in some cases becoming almost totally collagen.  While even normal Collagen is quite pliable, in the case of abnormal Collagen, it not only loses the elastin that normally accompanies it, but it itself becomes atrophied and inflexible.  So there are actually more than one underlying processes that contribute to the lack of flexibility in the affected tissue.

George,

I agree that your explanation of elastin / collagen is more accurate than my statement that one is a component of the other.  It seems they are distinct and more accurately often elastin accompanies type II collagen.  I am skeptical of your statement that collagen is pliable.  We are 50 % collagen.  Bones and teeth are composed of collagen.  Type II collagen is a pliable helix found in cartilage and such pliable tissue (including a healthy tunica).  I am also skeptical of the statement "the problem is NOT COLLAGEN.  The problem is HOW THE BODY METABOLIZES COLLAGEN."  I think the problem is the collagen.  it is the type of collagen, type II vs. type III


Tons of interesting information exists on this topic.  one site of interest is http://www.sgul.ac.uk/depts/histopathology/ECMI.html

I especially find these statements interesting.

All proteins are continually degraded and resynthesised. This process allows tissues to grow and to undergo remodelling (e.g. involution of the uterus).

and

Elastin turnover is extremely slow with a half-life approaching the age of the organism. Elastin is mainly synthesised during development and any “damaged” elastin is either not replaced or replaced with non-functional fibres.  Excessive elastin degradation is observed in several disease, e.g. emphysema and atherosclerosis.

I fear this conversation is apt to branch off in so many directions that it will be difficult to keep track of exactly which branches to follow.  There is a vast amount of information on every point.  Every new post raises more questions than it answers.

Title: Re: Hawk - Collagen, Elastin cont.
Post by: George999 on July 28, 2007, 12:32:18 AM
I am skeptical of your statement that collagen is pliable.  We are 50 % collagen.  Bones and teeth are composed of collagen.  Type II collagen is a pliable helix found in cartilage and such pliable tissue (including a healthy tunica).  I am also skeptical of the statement "the problem is NOT COLLAGEN.  The problem is HOW THE BODY METABOLIZES COLLAGEN."  I think the problem is the collagen.  it is the type of collagen, type II vs. type III

But what form the collagen takes IS dependent on how the body metabolizes collagen.  If the body metabolizes flexible collagen into inflexible collagen in a place where it doesn't belong, that process, excepting where it is transient, is the problem.

All proteins are continually degraded and resynthesised. This process allows tissues to grow and to undergo remodelling (e.g. involution of the uterus).

I would very much agree with this statement.

Elastin turnover is extremely slow with a half-life approaching the age of the organism. Elastin is mainly synthesised during development and any “damaged” elastin is either not replaced or replaced with non-functional fibres.  Excessive elastin degradation is observed in several disease, e.g. emphysema and atherosclerosis.

And I would very much disagree with this statement.  This is very old school.  They haven't observed it happening so they conclude it can't.  Note the comment I made to Tim regarding DNA remodeling.  DNA remodeling!  If I would have told someone five years ago that I could actually turn the clock back on my muscular DNA deterioration simply through exercise I would have been deemed to be crazy.  Now we know through research that that is exactly what happens.  When elastin gives up it is because whatever process in the body that is intended to replace it isn't working.  And that, in fact, may be the norm.  It may be simply part of the aging process.  But I am all but certain, that given the right stimulation, elastin can be produced.  There is already evidence of this.  There are cases of Peyronies on record where there is complete remission.  This can ONLY happen if elastin is able to infiltrate the tissue in question.  So I believe that they are simply wrong just like the 'experts' that put the statement that "most cases of Peyronies resolve themselves" on another infamous British website were wrong.  By the way, it is also now known that atherosclerosis CAN BE REVERSED given the right conditions AND I have personally seen keloids resolve over time.

- George
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on July 28, 2007, 12:42:45 PM
I really think that this is all too simplistic, and therefore of little value as a discussion. I do not mean that as a slam, but simply to let you know how I think.

For instance, stretching may not affect elastin at all. It seems clear that in tissue expansion that the total numer of skin cells is unchanged, but simply stretched out and thinner. The density of skin hair follicles for instance, spreads out when the skin is stretched with tissue expanders.

So we can remodel tissue, but what is happening biochemically is little understood - nor is the effect of stretching on tendons very well understood either. Theories may make sense, but that does not mean they are correct.

Where this gets important IMHO is when we start to take action. With little rationale or data to guide one, someone started using the VED to help Peyronie's Disease. This practice has grown, and is being systematically studied or used by sirgeons now (as a routine part of post-operative care). A very important part of the progression of Peyronies Disease is that of fibrotic contration. This requires contractile elements (not just a lack of elastin, nor an excess of collagen).

I think of plaque as an ill-defined clinical description of the thickened tissue characterized by abnormal amounts of collagen, fibroblasts, contractile elements, and all of this heaped up and thickened. I may have some of this myself, but much more than that, I clearly have a non-thickened contractile problem with my tunica. It does not heap up, but it becomes transformed into less distensible tissue.

No one has learned to distinguish the differences between a lesion like mine, and a more "classic" lesion with a thickened area of plaque, or why they are different. Until we have a better way to describe these differences better, we will not be able to account for the biochemical individuality of different men with Peyronies Disease.

So for now, we are limited to discussions of Peyronie's that are hampered by little data, and a lack of individual data that can help the individual with his own problem. Sharing what we think helps us to understand this disease, IMO. Arguing about who is "right" seems futile, given the limits of the data we use to guide us.

That said, I am always impressed with the civility of the discussions here, and the willingness to learn from each other.

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: j on July 28, 2007, 03:01:42 PM
As an engineer it's painfully obvious to me that we're speculating on a basis of totally inadequate information and training, and a inability to actually see or measure the phenomenon in question. 

But, the bottom line is: I'm 55.  New drugs take maybe 15 years to hit the market; even if a research breakthrough occurred tomorrow, it's not going to help me unless it involves a new application of an already available drug.

There's an outside chance that some antifibrotic drug is found to be effective.  Maybe injectable Collagenase someday becomes available and turns out to work for Peyronies Disease.   I'm not holding my breath, waiting.

Urologists will go on gathering statistics, writing papers and giving talks at conventions, but none of that activity actually helps their patients; it just generates fees for office visits where patients are told "yes, you have Peyronie's - come back in 6 months".  The real money comes from surgeries. Thanks, but I'll pass on that.

As I see it, my only realistic chance for improvement is from a 'mechanical' procedure - like stretching with a VED, or perforation (Leriche), or hyperthermia.  Except for (maybe ) Dr. Levine in Chicago, the medical establishment has no interest in pursuing these treatment possibilities. 

That's why I've started using a VED.  If I'm careful, I won't damage anything further, and it might even help. 







Title: Re: Specifics
Post by: Liam on July 28, 2007, 03:48:39 PM
Quote
Liam - I reject your criteria for Peyronies Disease.  You started by expressing the fact that if it gets better that it can be assumed it was not Peyronies Disease.  Now you seem to expand that to say that you think if it ever stabilizes that it was not Peyronies Disease.

I was speaking of this one case that started, apparently, at puberty.  So, in a nutshell, part one is my view.  Part two, nuh uh (no).  :D

Tim,  I agree about black and white thinking only because most people don't consider enough blacks and enough whites.  Grey thinking promotes he status quo.  Green thinking promotes Al Gore ;D.

One other thought is when a shoulder adhesion is "torn free" during a manipulation under anesthesia, the adhesion (plaque, thickening, nom du jour) is freed (my word) from the joint.  How does this compare to the Leriche technique?
Title: Re: Question Yet Unanswered
Post by: Liam on July 28, 2007, 04:35:18 PM
In Peyronies Disease, what causes the curve if not plaque?  If a person has a knife wound resulting in scar tissue and a curve, is this Peyronies Disease?  This is not rhetorical.  I would like for someone to explain how this is possible.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on July 28, 2007, 07:17:49 PM
Liam,

I think, or thought that it is widely accepted that Peyronies Disease is an abnormal scaring. 

Normal scaring is a normal immune response to a wound.  All scars both normal and abnormal are much less elastic than the soft tissue they replace.  Either could cause a bend or deformity in a penis in large enough quantities.

A main difference between abnormal scaring and normal scaring is that with
Abnormal scaring the mechanism for turning the scar tissue off, never occurs.  Some mechanism signals the less flexible collagen III scar tissue to began production.  It could be real trauma, microtrauma, or unknown events. This abnormal process goes unchecked and replaces totally healthy undamaged tissue.  Abnormal scaring includes keloids, hypertropic scars, and Peyronies Disease  plaque. 

Obviously a severe burn or cut into the penis can cause the immune system to just patch the wound and then turn the normal scaring process off at the edge of the wound..  That would require not be Peyronies Disease.  It would not be progressive, it would not calcify.  For this normal scaring to be sufficient to cause a bend it would require a very significant injury to  preceded the normal scarring event.  This type of injury would not go unnoticed by the recipient.

Even significant injuries of the penis can result in either normal scaring that just fixes the wound or they can result in Peyronies Disease that continues onto healthy tissue laying much more scar tissue than is needed.  Which of these two processes happens depends on a host of factors.  Many of these factors remain unknown to anyone. 

Insignificant or non-existent injuries could never create enough normal scarring to cause deformity.  They can however innate Peyronies Disease if the conditions are suitable for the process.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on July 30, 2007, 09:46:34 AM
Attached are two images of the wound healing process - hope this is of help in descrihbing the differences between normal and abnormal wound healing.
Title: Figure Captions too!
Post by: Tim468 on July 30, 2007, 09:49:25 AM
Figure 1. (top image) Normal wound healing following trauma or microtrauma to the penis does not lead to scar formation or fibrosis.
In a simplified view of a complex process, fibrin deposits and other factors attract macrophages and, via release and activation of cytokines (mainly transforming-growth-factor 1) induce fibroblasts to differentiate into myofibroblasts. Both cell types actively synthesize collagen and other extracellular matrix components. Myofibroblasts also facilitate closing of the wound, before being degraded via apoptosis; fibrin is removed by fibrinolysis. In the Peyronie's disease plaque, inhibition of fibrinolysis by plasminogen activator inhibitor-1, release of transforming-growth-factor 1, myofibroblast differentiation with reduced apoptosis, and accumulation of matrix metalloproteinase inhibitors (plasminogen activator inhibitor-1 and tissue inhibitors of matrix metalloproteinases) lead to excessive collagen deposition and disorganization (fibrosis) and abnormal healing (scar). Fibroblasts also contribute to collagen deposition. Arrows indicate stimulation or increase; bars indicate inhibition or decrease. MMPs, matrix metalloproteinases; PAI-1, plasminogen activator inhibitor 1; TGF-1, transforming-growth-factor 1.

Figure 2.  Peyronie's disease plaques result from dynamic interplay between profibrotic and antifibrotic factors in cells such as fibroblasts and myofibroblasts of the tunica albuginea
One of the antifibrotic mechanisms in the Peyronie's disease plaque is increased levels of nitric oxide and cyclic GMP resulting from sustained expression of inducible nitric oxide synthase. Fibrosis in smooth muscle of the corpora cavernosa and in penile arteries may be associated with aging and diabetes, contributing to corporal veno-occlusive dysfunction. Corporal fibrosis, like tunical fibrosis, seems to be counteracted by inducible nitric oxide synthase. Arrows indicate stimulation or increase; bars indicate inhibition or decrease. cGMP, cyclic GMP; iNOS, inducible nitric oxide synthase; MCP-1, monocyte chemoattractant protein 1; MMP, matrix metalloproteinase; nNOS, neuronal nitric oxide synthase; NO, nitric oxide; Peyronies Disease, Peyronie's disease; TGF-1, transforming-growth-factor 1.


Title: Re: Normal Vs Abnormal Scaring - apoptosis
Post by: Hawk on July 30, 2007, 10:09:12 AM
I started to refer to apoptosis in my post but Decided to keep it simple.  I am glad Tim's post refers to it,  One could read over that fact in the technical text.

Apoptosis is the normal (not traumatic) cell death.  It regulates all normal tissue as far as I know. It is why we are literally rebuilt bone, skin, and muscle (and more) many times in our lives.  Cells die and are replaced by other like cells.  It can also help us remodel scar tissue if, as the scar tissue dies it is replaced by more normal tissue.  Some cells do not readily relinquish life such as cancer cells that grow uncontrollably.  It is my understanding that cells making up Peyronies Disease plaque have longevity and resist apoptosis.
Title: Re: Tim's Charts ...
Post by: George999 on July 30, 2007, 10:34:23 AM
Tim,

Thanks for posting the flow charts!  The are really helpful in understanding the process to some degree.  They should be archived somewhere on this site for future reference.

From the "abnormal" chart, one can rather quickly deduce the potential value of the following:

1)  Anti-Oxidants (from Vitamin E to OPCs)  to attack the Reactive Oxygen Species at the head of the process

2)  TGF-Beta-1 inhibitors (like Pentox) to attack at the next level down regulating Collagen Synthesis

3)  NO precursors (like Arginine) to increase NO thus down regulating Collagen Sythesis via multiple paths

4)  cGMP up regulators to (like Forskolin) to down regulate Collagen Synthesis

Also, once again we see mention of Diabetes and Aging with potential anomalies in the underlying corpora cavernosa and in penile arteries possibly stimulating abnormal processes portrayed.  This, linked with research data suggesting poorer outcomes for those with Diabetes would tend to indicate that aggressively attacking insulin resistance with DIET, EXERCISE, and key supplements (CLA/Sesamin, ALC, etc) might contribute to improved outcomes.  If insulin resistance is known to make it worse in the case of diabetics, it would certainly seem helpful to attack sub clinical insulin resistance in the case of non-diabetics.  BUT, make no mistake that NO AMOUNT of supplements can make up for unhealthy diet and exercise patterns.  Diet (avoiding all refined sugars AND sugar substitutes AND using things like cinnamon and grapefruit to stabilize glucose uptake) and Exercise (daily) are essential to knocking down insulin resistance.  Supplements can then add fuel to that process.

Anyone see any other possibilities here?

- George
Title: Re: Cool stuff
Post by: Liam on July 30, 2007, 08:58:20 PM
Great stuff.  Love the flow charts.

My first question,however, was the one I really wanted addressed.  In Peyronies Disease, what causes the curve if not plaque? 

This is asked because of the continuing theme of Peyronies Disease without plaque (which  have a hard time accepting).  If the explanations are half as good as what I just read, you may make me a believer. ;)
Title: Re: Plaque
Post by: George999 on July 30, 2007, 09:48:42 PM
Liam,  I think the problem is with the definition of "plaque", which few people seem able to agree on.  Certainly, if it can be palpitated, just about everyone will agree that it is "plaque".  The problem comes when it can't be detected in the traditional manner.  But that does not mean that the tissue is not compromised.  What you will find down deep is tissue that is devoid of elastin AND consists of CHANGED collagen, with other aberrant processes going on in an ongoing fashion as portrayed by Tim's flow chart.  REMEMBER, there are multiple types of collagen that vary in degree of elasticity EVEN in the case where they are devoid of elastin.  And there is one type of collagen that meets the definition of "scar tissue", "plaque" or whatever name you want to call it, and it may not vary much in thickness from normal tissue, if at all.  And it tends to contract and stiffen.  While I know some of my views are controversial and probably a number of them are just plain off the wall (disclaimer), I see the tendency of tissue to "contract" as simply the inverse of "elasticity" which is typical of NORMAL collagen populated by a typical amount of elastin.  If you haven't experienced non-palpable plaque, you probably won't understand, but the common denominator is that if you were to put any of this tissue under a microscope, palpable or not, it would exhibit precisely the properties described above.  And if there is enough of it, in the right place, and at the right degree of 'maturity', it will result in deformity ("curve", etc.)  Now Tim can come and tear this apart and we will all learn more as a result.  I simply can't express emphatically enough what a great asset Tim is to this forum.  We are all blessed to have him here with his unique insights and expertise.  - George
Title: Re: What causes Curve
Post by: Hawk on July 30, 2007, 09:59:32 PM
In my not so humble opinion, curve is caused by ONE THING.  One side of the penis not expanding at the same rate as the other.  This in turn can only be caused by one thing, normal "elastic" tissue on that side has been replaced by scar tissue (plaque).

Subtleties like location (tunica or cavernosa) can determine whether the plaque can be felt with the fingers (palpable) or not but it has to be there.  Also distribution, as in one large area or many lesser areas on the same side may effect palpability.  Finally it could be that in the inflammatory stage some plaque just develops faster and is more inflamed, and is therefore more palpable.  We all know plaques tends to reduce in size as it matures.

Bottom line, there may be a host of things that determine if we can actually feel the plaque but if there is a curve, we don't have to wonder it is there.
Title: PS: To last post
Post by: Hawk on July 31, 2007, 07:27:04 AM
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.
Title: Hawk and "What Causes Curve"
Post by: Larry H on July 31, 2007, 07:36:23 AM
Hawk:

Great Job! Easy for all to understand and to the point.

Larry
Title: Re: At Last
Post by: Liam on July 31, 2007, 08:23:27 AM
Quote
Bottom line, there may be a host of things that determine if we can actually feel the plaque but if there is a curve, we don't have to wonder it is there.

This is all I've been saying.  I conceded a long time ago that maybe in some circumstances someone may not recognize the plaque by touch.  But it has to be there.

I said:
Quote
What causes the bend if not plaque (palpable or otherwise)?

I must say, however, if I had a curve and could not feel the plaque, I would have imaging done until I found out for sure what was causing it.

I can even live with what George said.  But there has to be something there.

I feel some closure.   :)

Two exceptions on which all will agree, though:

1)Congenital Curves -No plaque;  No Peyronies Disease (as Hawk said)

2)Trauma that directly compromised tissue of the penis causing a curve. - Lacerations, abrasions, burns, body modification (art) etc. - no Peyronies Disease


Now if you guys could find me that miracle case of a documented spontaneous recovery, I might start singing Kumbaya and ask for a group hug..............On second thought... ;)
Title: Re: Liam - At Last (hmmmmm!)
Post by: Hawk on July 31, 2007, 09:12:56 AM
2)Trauma that directly compromised tissue of the penis causing a curve. - Lacerations, abrasions, burns, body modification (art) etc. - no Peyronies Disease

The injury in the above quote could lead to Peyronies Disease or it could cause a curve without Peyronies Disease if the injury and resulting natural scar tissue were very significant.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on July 31, 2007, 09:43:11 AM
The tissue of Tunica from men with Peyronies Disease is abnormal elsewhere - not just in the plaque (remember the article?).

Plaque is heaped up and thickenedscar tissue with elements of collagen, fibroblasts, osteoclasts, etc. If it is not heaped up, it may not be easy to feel, but that does not mean it is any more or less stretchable.

Therefore, one can have no palpable plaque, but be histologically, and "elastically" abnormal, and thus not stretch out as well. That leads to a curve.

Think of taping a wad of paper to a balloon with duct tape, versus applying a thin piece of scotch tape. In both circumstances, the balloon will bend when inflated because the tissue is not stretchy right there.

The only thing that is remarkable about plaque is that it is palpable (ie thickened). That does not mean that non-palpable tissue is normal. If one develops a bend in the penis, or a dent, without a plaque, that is still Peyronie's Disease.

I am baffled why this seemingly simple concept gets so much debate.

Tim
Title: Re: Tim
Post by: Hawk on July 31, 2007, 12:36:54 PM
Tim,

Can I impose on you about the location of that article?  I do remember that there are identifiable abnormalities in the general tunica tissue of Peyronies Disease patients separate from the plaque.  I specifically do not recall if it clarified what those abnormalities were.  In other words did it more or less state that these changes include a lack of elasticity?

Any response other than  Duh! will be appreciated.  ;D
Title: Re: Plaque ...
Post by: George999 on July 31, 2007, 12:50:00 PM
Tim,

I am convinced that the confusion here ALL revolves around the definition of the term "plaque".  Some define plaque as "scar tissue on the tunica", some define it as "any abnormal tunica tissue", and others like you, define it as "palpable thickened tissue".  I think that if we could get past this whole semantic struggle, it would really help us to find common ground in this discussion.  Since I think you have more insight in this area than most of the rest of us, I would suggest that we follow your lead and define plaque as:

"heaped up and thickened scar tissue with elements of collagen, fibroblasts, osteoclasts, etc."

All the while realizing that other non-thickened abnormal tissue in the tunica could be causing deformity.  In the case of congenital issues, the differentiating factor is that the tissue in question is NOT abnormal.  Rather it is ONLY asymmetric in dimension.

Thus what marks Peyronies is the abnormality of the tissue composition, not whether or not it is palpable or whether or not it is considered to be "plaque".  I suppose that it could all be classified as some form of "scar tissue", perhaps Tim could comment further on that.

Hopefully this explanation will satisfy Hawk and Liam and we can all achieve the same page on this issue.

- George

PS - Just to demonstrate how quickly medical science is moving these days, researchers have just announced that they have discovered what is potentially an extremely simple and effective crackerjack cure for juvenile onset type 1 diabetes:
http://www.healthday.com/Article.asp?AID=606783 (http://www.healthday.com/Article.asp?AID=606783)
Title: All Tunica involved
Post by: Tim468 on July 31, 2007, 01:19:53 PM
Here is the abstract - I have not gotten the entire article (it is in a Serbian Journal, written in Serbian)(and the translation of the abstract is poorly done. But the message is clear. In about 67 percent of patients where they excised "normal looking" tunica opposite of the lesion to do a NEsbit procedure, it abnormally stained for "fibrosis". Presumably, the H and E stain was for fibroblasts or similar cell types (it is not a stain used for collagen generally). The take home, though, is that it is not normal when it looks normal macroscopically. It might go without saying, but shall not, that if it looks normal, it would palpate as normal through the skin as well!

Authors: Nale D., Mii S., Vukovi I.,  Radosavljevi R.

Institute: Institut za urologiju i nefrologiju, Klinicki centar Srbije,  Beograd.

Titile: [Induratio penis plastica--localized or diffusive fibromatosis of tunica albuginea penis?]. [Serbian]

SO Vojnosanitetski Pregled.  63(11):939-44, 2006 Nov.

Abstract:

BACKGROUND/AIM: The part of the tunica albuginea that is not affected by localized pathological fibrosis is excised by the Nesbit contralateral excisional corporalplasty in patients with induratio penis plastica (IPP). The aim of this study was to find out if there were any histological changes of the macroscopically normal tunica albuginea excised during the Nesbit corporalplasty.

METHODS: A total of 31 patients, mean age 45 +/- 7.65 years, were surgical treated for extensive penile curvature (impossible or difficult penile imission in the vagina), using the Nesbit surgical technique. The tunica albuginea tissue was manipulated by Allis's clamps and excised in the shape of a diamond and placed in the 4% formaldehyde solution for histological analysis. The excised tunica albuginea was not wider than 1 cm, while the histological preparations were 3 to 5 microm thick, and they were stained with hematoxylin-eosin. The excised tunica albuginea tissue appeared macroscopically (anatomically) normal in all of the operated patients. In 28 (90.3%) patients opperated for dorsal curvature of the penis, the tissue of the tunica albuginea was excised from the urethral ridge, while in 3 (9.7%) patients operated for lateral curvature, the tissue was excised from the lateral corpus cavernosum.

RESULTS: The histological results were normal in 12 (38.7%) patients, while in 19 (61.3%) cases the findings indicated fibrosis of tunica albuginea.  No significant difference in the patients age was found between these two groups (p = 0.09). The analysis of a total number of histological results of the patients with tunica albuginea fibrosis in relation to the patients with normal results showed that there was no significant difference (chi2 = 1,2; df = 1; p > 0.05), suggesting that the macroscopically normal tunica albuginea is not always expected to yield normal histological result.

CONCLUSION: Significantly more reported histological results of tunica albuginea fibrosis in the location that appeared normal macroscopically (chi2 = 27.5; df = 1; p < 0.01) indicated that, in the majority of IPP patients (61.3%), pathological lesion was diffusive with localized phenotypic expression plaque in the tunica albuginea, showing that, in the majority of cases noxa acted diffusely.
Title: Re: Tim -
Post by: Hawk on July 31, 2007, 01:39:54 PM
Thanks Tim,

I needed that second read.  I do not think I gave it careful attention the first time.  While it does clarify some things, like every answer, it raises a question or two.  If the abnormal tissue was taken from the opposite side of the plaque/curve, it would have to be concluded that it must stretch more than the plaque side thus the curve.  This may or may not mean it has normal expansion.

I was also a bit puzzled because in the case of dorsal curves they took tunica tissue from the opposite side (to be expected). But for
Quote
patients operated for lateral curvature, the tissue was excised from the lateral corpus cavernosum.
  That must be the opposite side but why the corpus cavernosum and not the tunica?

That last question does not require an answer, just thinking out loud.
Title: Re: What is the article telling me?
Post by: Larry H on July 31, 2007, 03:19:18 PM
Tim:

Although I don't like what the article says, it is interesting. The question is then, what is it telling me, how do Peyronies Disease patients apply this information to the treatment of their condition? To use my case as an example, I have a very well defined thick band aid size strip of plaque on the top of the shaft causing a 70 degree upward bend. I always thought that my tunica was only diseased in the area of palpable plaque, now the article seems to indicate that perhaps all of my tunica albuginea is diseased.

So again, what is the practical application of this new information? For instance, if I was planning to run over to Norfolk to have surgery by Dr. Jordan should I now reconsider because the condition most likely will reappear in another location? If I have plaque incision or excision will it result in a bend in another direction because of the diseased un-palpable plaque in other areas?

All information is good (if it is correct) because it is educational. However, the best information has a practical application. Do you see a practical application for this information?

My Best,

Larry
Title: Hopefully a clarification
Post by: Tim468 on July 31, 2007, 03:50:32 PM
Hawk - I think this is a translation issue - that the tissue was the tunica over the corpus cavernosum, and the tunica over the urethral ridge. In the Nesbit, the plication is taken in the tunica - the tissue tolerances of the other tissue is such that it does not hold suture well (I think).

Larry - good questions - no answers.

I am not sure that there is "practical" value in this information. The point of sharing it is to remind us that what we can see and palpate is not always the entire story. Rather, there may be microscopic changes or physiological changes that are more generalized (a handful of articles show increased autoimmune markers in men with Peyronies Disease; increased evidence of other related diseases and so on).

I can't give you advice about what to do for you. For me, though, I know that if I had gone and gotten surgery at 25, I would be bending in other places by now, since the disease has continued to progress. It is more likely that someone like me has a more diffuse problem than someone with a history of injury during sex, development of scar/plaque, and a stable lesion. So I might avoid surgery, and the other fellow might be a perfect candidate.

What this goes to IMO is characterizing WHY some of us are different. Hopefully it can also help us understand why some of us might heal, while others do not, or understand why some get piled up plaque whereas others do not. And if it helps end the seemingly endless debate about plaque and what it is like (as if we are all the same), well then, all the better!

Tim
Title: Re: Yet another question ...
Post by: George999 on July 31, 2007, 04:29:52 PM
Amazing how every new piece of research seems to create more questions than answers.  Well here goes.  If indeed areas of the tunica unaffected by obvious disease, in fact, test out to be abnormal, then could it be possible that the abnormal histology was actually present PRIOR to the manifestation of Peyronies and in fact could have been a precursor to the Peyronies?  In other words, could it be that a man with an outwardly normal penis is actually extremely vulnerable from any tiny degree of trauma due to preexisting abnormalities in his tunica?  How is that for a question?  Any thoughts?  - George

PS - Why am I asking this question?  Well, because it seems like much of the effort in treating Peyronies is directed at treating the "plaques".  I see this as perhaps trying to treat and correct the symptoms rather than the underlying problem.  If the abnormal tunica that APPEARS outwardly to be normal is indeed a preexisting condition, and I have yet to see any evidence that would demonstrate it is not, it would seem that THAT is the physiological aberration we should be targeting and attempting to correct.  And, in fact, this is why I think that Larry is asking a VERY good question here.  On the other hand, Hawk makes a very good argument that the abnormal tissue is simply tissue that is left behind AFTER it has been over run by the moving line of plaque.  This would also make sense, in which case one would have to not only look at what could be done to treat the plaque, but also consider what might be able to be done to deal with the abnormal tissue left in its wake.  BUT in this case, Larry's fears might be unfounded, since the abnormal tunica might be the end result of Peyronies rather than a breeding ground for it.  My own personal history actually seems to support Hawk's theory as opposed to the theory of preexisting abnormalities since all of my deformations have had there locus in an area at one time affected by palpable plaque.  But I would certainly be interested in hearing how the experiences of others resonate with these two theories.  And then of course there is always the possibility that BOTH statements are true and that abnormal tunica can be either a precursor OR a product of Peyronies.  (more questions than answers ???)
Title: Re: Tim
Post by: Hawk on July 31, 2007, 04:38:20 PM
Tim,

A bit off topic, but I was just reflecting on your long history with this condition and how it began at an abnormally young age with no injury (as I recall).  I was interested enough that I went looking for your history and found you had not posted one.  I know with such a long history it would take some time but it would be some rich information for many of us, especially the young guys just registering on the forum.  You have way to many posts for a member to try to piece it together.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: j on July 31, 2007, 04:45:44 PM
tim468, what is the actual medical definition of the term "plaque"?  I I also have Dupuytren's contracture, which as I understand it is essentially the same thing in a different location - the tissue changes are identical.  The word "plaque" is never used in describing Duputyren's. 

I hear for example of "plaques" in the brains of people with Alzheimer's, an unrelated condition; so it seems like "plaque" is just a synonym for bad stuff, or maybe for unwanted accumulations of tangled proteins.
Title: Re: Yet another question ...
Post by: Hawk on July 31, 2007, 04:53:10 PM
In other words, could it be that a man with an outwardly normal penis is actually extremely vulnerable from any tiny degree of trauma due to preexisting abnormalities in his tunica? 

George,

I recall an old study where the tunica of some small number of men dying from accidents were examed postmortem and many with no clinical signs of Peyronies Disease were found to have  some sort of Peyronies Disease like changes to the tunica.  It may have been a French study. Sorry to be so vague but it raises the question of was Peyronies Disease just developing or would these tunica abnormalities be there for years prior to Peyronies Disease. 

At what age do would the abnormalities present through tissue samples?
Would they appear from puberty, only as the disease is manifesting, or is the onset of the disease very slow and the symptoms only manifest at the last stages?

Just a few more reasons we need widespread awareness and research.

Title: Re:Peyronies Disease in Women
Post by: Liam on July 31, 2007, 06:58:29 PM
George said
Quote
All the while realizing that other non-thickened abnormal tissue in the tunica could be causing deformity.  In the case of congenital issues, the differentiating factor is that the tissue in question is NOT abnormal.  Rather it is ONLY asymmetric in dimension.

Thus what marks Peyronies is the abnormality of the tissue composition, not whether or not it is palpable or whether or not it is considered to be "plaque".  I suppose that it could all be classified as some form of "scar tissue", perhaps Tim could comment further on that.

Fibrosis may be a better term.  So, if the curve is caused by fibrotic tissue, it is Peyronies Disease.

Tim said:
Quote
The only thing that is remarkable about plaque is that it is palpable (ie thickened). That does not mean that non-palpable tissue is normal. If one develops a bend in the penis, or a dent, without a plaque, that is still Peyronie's Disease.

I assume you meant without plaque but with fibrotic tissue. 


Guys,  the reason this has been an issue is because of a large group young men with no palpable plaque and nebulous symptoms (atypical at best).  All of these pointing away from Peyronies Disease, at least by traditional definitions. 

Hell we can be real open.  Lets include women.  If we don't need plaque, why does the patient need a penis.

Quote
Diabetes mellitus produces significant adverse effects on the hemodynamic mechanism of clitoral engorgement and leads to diffuse clitoral cavernous fibrosis in a rabbit model.[22]
Source:  http://www.medscape.com/viewarticle/488894_4    - Sildenafil and Clitoral Arterial Blood Flow

My point is...sometimes it is NOT Peyronies Disease.

I know, I know... I'm a little over the top on this one.  My exaggeration is to make a point.  But, I will not be surprised when someone says they are probably related (maybe they are).  ??? ;) ???
Title: Liam - Women with Peyronies Disease
Post by: Hawk on July 31, 2007, 07:11:30 PM
Liam,

I have to say this.  To me you almost seem to have an obsessive compulsive desire to narrow the definition of Peyronies Disease to limits that few if any can support.  Are you vying for some exclusive status as the world's only Peyronies Disease patient.  PDMAN What a chick magnet that is. ;D

Also, on your clitoris post.  I have actually wondered that since a clitoris has erectile tissue and the embryonic origins are the same, why women don't get Peyronies Disease.  I concluded they might well get it but who would notice or really care since it would have no impact on functionality.  You just verified it for me.  It may add a whole new dimension to the Ladies Room.
Title: Re: Abstract - Histological Changes
Post by: Liam on July 31, 2007, 07:12:42 PM
Quote
RESULTS: The histological results were normal in 12 (38.7%) patients, while in 19 (61.3%) cases the findings indicated fibrosis of tunica albuginea.  No significant difference in the patients age was found between these two groups (p = 0.09). The analysis of a total number of histological results of the patients with tunica albuginea fibrosis in relation to the patients with normal results showed that there was no significant difference (chi2 = 1,2; df = 1; p > 0.05), suggesting that the macroscopically normal tunica albuginea is not always expected to yield normal histological resultAre these just biomarkers for Peyronies Disease?

Are these possibly just biomarkers?

Biomarkers-Substances in the blood whose levels can indicate the presence or extent of disease.
www.dcri.duke.edu/patient/glossary.jsp

Biomarkers-Substances sometimes found in an increased amount in the blood, other body fluids, or tissues and that may suggest the presence of some types of cancer. Biomarkers include CA 125 (ovarian cancer), CA 15-3 (breast cancer), CEA (ovarian, lung, breast, pancreas, and GI tract cancers), and PSA (prostate cancer). Also called tumor markers.
www.spineuniverse.com/community/cancerdictionary.html
Title: Re: Defining Peyronies Disease - Words Have Meanings
Post by: Liam on July 31, 2007, 07:42:40 PM
My search is for truth.  I know your statement is as exaggerated as mine.  I might get on "Who Wants to be a Superhero", though.  Just add SUPER PDMAN  ;)

I said:
Quote
So, if the curve is caused by fibrotic tissue, it is Peyronies Disease.

By anyone's definition, this is pretty inclusive.  How can you or anyone find fault with this statement?


It is just when I read about someone using drugs and alcohol and over masturbating and noticing a dent that comes and goes and an erection that is not as firm as it once was and two doctors said it wasn't Peyronies Disease but he didn't trust them, I have a hard time defining that as Peyronies Disease.  Granted that was an amalgam of several posts.  it does serve to illustrate my point.

I have softened my view about palpable plaque, although noone here with Peyronies Disease has said they have NON palpable plaque.  Hard to find was the strongest descriptor I've seen.  With the feeling going away in my fingertips, though, I can imagine....maybe....someone couldn't feel the altered tissue. 

Think about my questions for a minute.

What causes the curve?

Has spontaneous recovery been clinically documented?

These are two BASIC questions.  The answer to these is absolutely essential if we hope to find a cure.  So, I reject the implication (although done in jest) my querries are somehow self serving.

Also, if it is not important to understand what the plaque or fibrosis is and we accept the view that trauma leads to Peyronies Disease, we can just tell men, "It is just a callous from over use." ;)
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: j on July 31, 2007, 08:33:07 PM
I like to keep coming back to comparisons to Dupuytren's disease.  As per this paper (and others I've seen), the tissue changes are essentially identical - given the large number of men who have both, they may be just 2 expressions of the same disease. 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16035818


As far as I know, the incidence of spontaneous resolution of Dupuytren's is zero.  Absolutely unheard of.  And I've been following this closely for about 10 years.

Title: Re: Dupuytrens and Peyronies Disease
Post by: Liam on July 31, 2007, 10:01:42 PM
Quote
they may be just 2 expressions of the same disease.
 

Expressed well :)
Title: Defining the Clinical Characteristics of Peyronie’s Disease in Young Men
Post by: Liam on August 01, 2007, 09:13:46 AM
Defining the Clinical Characteristics of Peyronie’s Disease in Young Men
Serkan Deveci, MD , Carin V. Hopps, MD , Keith O’Brien, MD , Marilyn Parker, RN , Patricia Guhring, RN , and John P. Mulhall, MD Department of Urology, Weill Medical College of Cornell University, New York Presbyterian Hospital, New York, NY, USA
Serkan Deveci, MD, Department of Urology, Weill Medical College of Cornell University, New York Presbyterian Hospital, 525 E 68th Street, New York, NY 10021, USA. Tel: +1-212-746-5653; Fax: +1-212-746-0403; E-mail: drdevecitr@yahoo.com
ABSTRACT
 
Introduction. Peyronie’s disease (Peyronies Disease) is usually seen in men in their fifth decade of life.

Aim. In this study, we investigated the characteristics of the disease in young men.

Main Outcome Measures. The demographics, clinical features, and associated comorbidities of the patients with Peyronies Disease were retrospectively reviewed.

Methods. The findings were compared between men with the disease who were under 40 years of age with those over 40 years. Statistical analyses were conducted to define differentiating features between these two groups.

Results. Of the 296 patients, 32 were under the age of 40 years and 264 over 40 years. The mean duration of the disease was 2 ± 4 and 6 ± 8 months in the respective age groups. Fifty-six percent of the patients under the age of 40 years and 75% of the patients over this age presented with curvature (P < 0.01). Thirty-seven percent under 40 years and 12% men over 40 years had more than one plaque at presentation (P < 0.01). Dupuytren’s contracture was seen only in patients over 40 years of age. Pain at presentation was found in 75% under the age of 40 years and in 65% over 40 years (P = 0.03). Trauma history was found in 18% under 40 years and in 5% over this age (P < 0.01). Statistical significant differences were found between the groups under and over the age of 40 years for hypertension (P < 0.01) and dyslipidemia (P < 0.01). Diabetes was noted in 50% of the patients under the age of 40 years and in 18% of the patients over this age (P < 0.001). Multivariate analysis of conditions associated in men with Peyronies Disease under 40 years of age showed statistical significant differences for diabetes (P = 0.015), presentation within 6 months (P = 0.004), and having multiple plaques (P = 0.008).

Conclusions. Young men with Peyronies Disease are more likely to present at an earlier stage of the disease, to have diabetes, and to have more than one plaque at the time of presentation. Deveci S, Hopps CV, O’Brien K, Parker M, Guhring P, and Mulhall JP. Defining the clinical characteristics of Peyronie’s disease in young men. J Sex Med 2007;4:485– 490

Source:  http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00344.x?journalCode=jsm
The Journal of Sexual Medicine
Volume 4 Issue 2 Page 485-490, March 2007

Can't remember if this had been posted here or not.
Title: Re: Study/Hawk
Post by: Larry H on August 01, 2007, 09:43:04 AM
Hawk:

The study you mentioned to George goes back almost 40 years. It was in an article by B.H. Smith called Subclinical Peyronie's Disease and published in the American Journal of Clinical Pathology. It was a study of autopsy's done one 100 men who had no known Peyronie's Disease. Out of the 100 men, 22 were found to have "asymptomatic fibrotic lesions of the tunica albuginea".

Larry
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 01, 2007, 10:55:33 AM
Liam,

In your quote that refers to biomarkers, I am not sure what you are quoting. The article I referenced did not mention or use the term biomarkers.

I think it would be very useful, and in fact I consider it inevitable, that biomarkers will eventually be used to identify those at risk for developing Peyronies or other fibrosing disorders.

I still do not get it with the your (Liam's) perseveration about plaque. All that it is is palpable fibrotic tissue. The tissue may be non-palpable, and yet be fibrotic. One could say it is "not as advanced", but if you have a bent penis and pain, what is the difference? Why is limiting either the definition, or the discussion, to "palpable" helpful? I do not see it that way.

Having looked at such tissue under the microscope, I cannot fathom the difficulty in accepting that some abnormalities of tissue structure may not be palpable through a layer of skin by a human finger. Is the digital dexterity of a urologist to be the defining diagnostic characteristic of a disease!? Maybe when the disease was first described, but not now. That is why they use ultrasound, or MRI - to see if they can extend their diagnostic accumen such that men can be helped.

Finally, the study that described the increased frequency of "asymptomatic" plaque is intriguing, for it suggests not that such men had no problem, but that they did not ask for help. I believe that onereason for an increased reporting of Peyronie's (according to a talk at a national conference) is due to increased willingness for men to seek help, and an increased expectation that sexual activity is their right, even in later middle age. We owe a lot of that to the "sexual revolution" and the release of Viagra on the market.

Tim
Title: Re: Autopsy Study
Post by: Larry H on August 01, 2007, 12:08:49 PM
Tim:

If you are referring to the autopsy study that Hawk mentioned some posts back, I have also found it most intriguing. My take has always been that the men in the study didn't know they had a problem so of course they didn't seek help. However, after reading your comments and looking at it in a different light perhaps some or all knew they had a problem but concealed it and didn't seek help. With the study going back to the less enlightened time of the late '60's that certainly could be the case.

Of course the 22% incidence is what really caught my attention. I first saw reference to the study in a Peyronie's review article authored by several urologists including Tom Lue and printed in The Journal of Urology in 2003. They went on to say that the study suggested that these asymptomatic lesions may develop in the natural course of aging and sexual activity.

Larry
Title: Re: Asymptomatic fibrosis ...
Post by: George999 on August 01, 2007, 12:18:07 PM
The assumption that these men DID NOT ask for help is also suspect.  My experience with uros tells me that back in those days those men may well have complained only to be told by their docs that the problem is "just a part of the aging process and there is nothing to be done for it", end of complaint.  Those days were just so different from the time in which we live now in which we all tend to EXPECT solutions to our afflictions and we are very put out when medical technology fails to deliver.  Back then we were all just thankful that our hearts were continuing to beat for another day.  We would mention things to our docs and would rejoice at the answer "well ... it won't kill you".   ;)  - George
Title: Re: Plaque
Post by: Liam on August 01, 2007, 02:57:50 PM
Tim,

I was raising the point that these may well indeed be (used as, I'm not sure of the grammer) biomarkers even though the author of the paper did not label them such.

As for the plaque issue, here is what I previously said.
Quote
So, if the curve is caused by fibrotic tissue, it is Peyronies Disease.
and
 
Quote
I have softened my view about palpable plaque, although no one here with Peyronies Disease has said they have NON palpable plaque.  "Hard to find" was the strongest descriptor I've seen.  With the feeling going away in my fingertips, though, I can imagine....maybe....someone couldn't feel the altered tissue. 
I added the quotes to hard to find to help readability.


Here is what you said,
Quote
I cannot fathom the difficulty in accepting that some abnormalities of tissue structure may not be palpable through a layer of skin by a human finger.

Seems I extended that possibility.  You just don't hear of it happening very often.  I do think if it is hard or thick enough to bend a penis, a good physician should be able to feel it.  But, if they can't, they can get an ultrasound.  Not that it will change anything other than a few bucks for the procedure. 

I found this in a paper you submitted.  I bring it up to substantiate why I could think a person with a curve should be able to feel something.
Quote
Definition
Peyronie’s disease is a primary and progressive
fibroblast proliferation of the albuginea of the
penis. It could also involve the corpus cavernosum
and the septum in the later stages. Collagen and
calcium deposition are accompanying patterns.
This last phenomenon provokes penile curving
,
which may affect vaginal penetration.
I think your views and George's views on the autopsy study may be dead on.  The guys died, for goodness sake.  Maybe a few of them were sick and had bigger worries than a knot or thickening in their penis.  More than a few probably had ED and may not have even known.  The possibilities are numerous.

Now my one remaining outlier view is there is no spontaneous recovery.  FIRE AWAY!!! ;D
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Larry H on August 01, 2007, 03:23:42 PM
George:

That is also a real possibility as times have certainly changed, and in some respects it's a hell of a shame, but that's the way it is. I remember several years ago my urologists asked me if I knew of any history of Peyronie's on either parents side. I laughed and told him that my parents and my wife's parents wouldn't even discuss cancer much less a bent penis. I wasn't about to know if my father or uncles had Peyronies Disease.

We are talking about a study that came out in 1969, an autopsy study, so you would assume that when these folks were among the living their Peyronies Disease went back to the '50's and possibly beyond.

Of course we are doing a lot of speculating in this area of the study. However, there is one solid fact of importance and that is that the study indicated that 22% of the cadavers autopsied had tunical lesions. Now when I first read this my take was that these 22 men had undiagnosed Peyronies Disease, but when thinking about what asymptomatic, fibrotic lesions means I'm not so sure. My laymans simplistic definition would be "a non-diseased abnormal change to the tunica caused by trauma" (this also squares with the Lue paper suggesting the lesions developed from the natural course of aging and sexual activity). I stand to be corrected if I'm off base with my definition, but if I'm substantially correct does it mean that these men did in fact have undiagnosed Peyronies Disease, or the precursor to Peyronies Disease. Any thoughts?

Larry
Title: Re: Where is the Smith Paper
Post by: Liam on August 01, 2007, 03:39:34 PM
Is there a copy I can read?  I know I've read it in the past.  Its nowhere to be found on my computer now :(
Title: Re: Smith Paper
Post by: Larry H on August 01, 2007, 04:04:46 PM
I have never read the actual paper, I've only seen it referenced in several more recent papers in discussions about the incidence of the disease. Since it's 38 years old it may be hard to get a copy.
Title: Re: Plaque
Post by: George999 on August 01, 2007, 04:16:38 PM
Now my one remaining outlier view is there is no spontaneous recovery.  FIRE AWAY!!! ;D

Well Liam my friend, let me take that first shot.  My contention is that there are, in fact, plenty of known cases where men suffer severe penile trauma and heal flawlessly.  This fact alone should call into question your position on spontaneous remission.  NEVER say NEVER, remember that old standby?  If people can heal flawlessly from major trauma, that is an indication that there is some underlying condition causing a FAILURE to heal properly in some cases.  So from that one can deduce:

No underlying condition = Complete healing
Severe underlying condition = Peyronies

But what about:

Mild occasional underlying condition = Potential Peyronies followed by remission?

You yourself are digging up stuff that points in that direction.  Many people have speculated that TGF-beta-1 is the driving force behind Peyronies.  Now BMP7 is being credited with being the antidote to TGF-beta-1.  But BMP7 occurs naturally in tissues just like TGF-beta-1.  So perhaps the question that needs to be asked is not why Peyronies exhibits excessive TGF-beta-1 activity, but rather why Peyronies is typified by insufficient BMP7 activity.  Here again, this all points to a MAJOR metabolic imbalance with far ranging ramifications that go far beyond Peyronies.

So do we just pump the patient full of BMP7 like we give insulin to a diabetes patient or do we ask WHY is the patient BMP7 deficient in the first place?  What could be the major metabolic imbalance causing it?  I would once again suggest that all roads somewhere lead back to the major medical plague of our modern era - Metabolic Syndrome typified by insulin resistance and lipid overflow in the liver.  And here again, rather than pumping people full of insulin and Lipitor, we need to be asking what it is that is causing this whole cascade in the first place and how can we poke a stake in that wheel.  We have to start thinking about CURING people instead of just treating symptoms.  Once you get in that mode, you see the potential for INDUCING remission.

One of the first laws of troubleshooting is that you first fix what you KNOW is wrong and then you deal with the stuff you don't understand.  But that somehow doesn't translate over to the medical profession.  So we have people that we know are walking around with excessive levels of insulin, cortisol and serum lipids, but they don't get treated until AFTER the problem manifests itself and then they only get treated with a maintenance objective rather than looking toward a cure.

Widespread remission in the case of a whole slew of diseases is only going to come when we start at the basic metabolic level and fix the underlying problems and believe me, they CAN be fixed.  I have experienced that to the point of a complete cure of my 20yr+ affliction with hypertension and I plan to drive it even further to the point that I see some response at the Peyronies level.  If one can literally drive their hypertension into complete and full remission, it should certainly be possible to do the same with Peyronies.

Modern medicine has achieved great technology and skill, but it is also very myopic.  Example:  I had hypertension, so I was advised to follow a "low fat diet" and everything was pointed toward looking at LDL/HDL levels and ratios.  And it was suggested that I should be sure to consume foods with the endorsement of the Heart Association.  Well, part of achieving a "remission" with the hypertension was in realizing that much of that advice was simply wrong.  In the first place much of the food endorsed by the Heart Association was low fat, but loaded with sweeteners, everything from artificial no calorie ones to even corn syrup of all things.  WRONG ... WRONG ... WRONG!  These things just cause me to add weight which increased physical stress on my kidneys and cardio-vascular system which further drives up my blood pressure.  So you say, well that may be true of corn syrup, but not the artificial sweeteners.  WRONG again!  While artificial sweeteners contain no calories, they DO make people hungry.  Hunger not only causes you to eat more stuff which DOES contain calories, it also slows down your metabolism and so triggers two paths of weight gain right there.  It also feeds certain bacteria in the gut which stimulate weight gain.  And then there are the hypertension drugs that actually cause weight gain and just add to the problem.  EVERY hypertension patient, with rare exception, should be on a strict low glycemic (NOT low carb!) diet AND should be encouraged to consume selected fats since cutting the wrong kind of fats can also actually induce weight gain.  And docs should not be measuring progress just by fasting LDL/HDL, but rather also by lipid overflow, in other words non-fasting serum triglycerides which give a much more accurate picture of Metabolic Syndrome risks.  And weight objectives should not be measured on the old scale in pounds, but rather with a tape measure in terms of hip to navel circumference differentials.  At that point you would see a lot of people making some real progress toward health and you would see our current medical crisis begin to fade away.  And then I could repeat the same rant on the diabetes side where the whole myopic focus is on glucose rather than a holistic approach leading to research driven weight loss and restoral to health.  I have not mentioned exercise recommendations because the docs generally get that right.  So there.  Fire back!  ;D  - George
Title: Re: George - Spontaneous recovery
Post by: Liam on August 01, 2007, 06:19:37 PM
I agree with most of what you say.  It's the conclusion I differ on.  What would happen to diseased tissue if a spontaneous recovery happened?  Would it detach from the healthy tissue and then get absorbed.  What chemical does the body produce that breaks this altered tissue down?  How long does the process take?  These are some of the questions that cause me to doubt spontaneous recovery.

I believe a cure can be found.  It may even be a "natural" cure.  I just can't believe the body goes haywire enough to produce this hateful fibrosis, then stabilizes, then corrects all the damage done and eliminates the fibrotic tissue.

I wish it would happen.

This does not mean I don't believe Peyronies Disease can and does stabilize.  Its the reversal I have problems with.
Title: Re: Plaque, etc.
Post by: George999 on August 02, 2007, 11:33:48 AM
Liam, remember that collagen is the "glue" that holds tissue together.  It is constantly being broken down and replaced by new collagen.  When the addition of new collagen occurs faster than the breaking down of the old collagen and/or when the new replacement collagen is the wrong type, fibrosis is advancing.  When the breakdown is exceeding the accumulation and/or when the replacement collagen is of the appropriate type, fibrosis is being eliminated.  Remember, this is all happening on the cellular level.  Its not like on one side you have perfectly normal tissue and on the other it is fibrotic.  It happens in degrees and the whole process is very dynamic even when it appears to our senses to be stable.  There is constant turnover of collagen even in scar tissue.  And somewhere there is a metabolic key that tells the body that scar tissue is no longer appropirate and that it is time to begin laying down normal collagen.  That is what needs to be identified and BMP7 begins to look very interesting from that perspective.  TGF-beta-1, on the other hand, plays a key role in encouraging the never ending process of generating scar tissue, even when it is no longer needed.  But I understand your skepticism.  I had a difficult time believing that I could reverse my hypertension until I discovered the keys and was finally able to pull it off.  At this point, I believe that most if not all hypertensives and diabetics can achieve "remission" if they are willing to address the root of the problem.  But it was hard to see it that way before when numerous experts were telling me that it was impossible to achieve.  I experienced grave doubts and times where I wondered if I was just fantasizing.  But now I see things from a whole different perspective.  The human body is truly amazing and its recuperative capacity is beyond belief.  But to capitalize on that, basic dysfunction has to be addressed and corrected and we know enough these days to achieve that.
Title: Another intriquing paper
Post by: Tim468 on August 02, 2007, 01:52:09 PM
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14996430&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

Again, the better stuff seems to come out of his (Gonzalez-Cadavid) lab - this is the paper that got others like Lue into looking at Pentox, I believe.

Tim
Title: Re: Spontaneous
Post by: Liam on August 02, 2007, 06:07:24 PM
George,

If you have to alter your diet and take supplements, we are talking about a cure (which is a GOOD thing  :) ) not a spontaneous recovery.  I know that seems what some would call playing semantic games.  My point is it ain't gonna get better on its own.  We will have to do something.  This may be surgery, injections, pills, creams, regulating diet, supplements or a combination of the aforementioned. 

One of my favorite sayings, which supports your views is:

If you always do what you've always done, you're always going to get what you've always gotten.



Title: Re: Another intriguing paper
Post by: percival on August 02, 2007, 06:11:47 PM
Tim
This makes interesting and encouraging reading. However the doses given to the rats would, for a 13 stone guy, scale up to 186g/day arginine; 827 mg/day pentox or sildenfal. A bit on the high side!
Regards
Percival
Title: Re: Spontaneous Recovery
Post by: George999 on August 02, 2007, 06:26:43 PM
Liam,

This whole thing is most definitely a matter of semantics.  I really doubt if anybody recovers from anything for no reason.  But sometimes people recover for no apparent reason.  This IS a reason, we just can't put our finger on it.  And those are the cases that get referred to as spontaneous recovery.  So if you don't like that definition, thats OK because we are both on the same page in terms of concept even though we can't find agreement as to the words to express it.

- George
Title: Re: Spontaneous recovery
Post by: percival on August 02, 2007, 06:32:58 PM
Current discussions on spontaneous recovery have made me recall the very first time I noticed a problem with my unit. 24 years ago at the age of 33 I discovered a small lump underneath in the spongiosum tissue around the urethra. It caused an indentation underneath when erect, but it was localised and not really visible from above and there was no pain or bend. Although concerned at the time, I was working overseas and left it alone. It disappeared completley after about 3 months - a spontaneous recovery.
Unfortunately, a year or so later plaque appeared on the side near the glans causing a 30 degree bend to the left. This plaque has never disappeared, but the bend has more or less gone because plaque also appeared on the right side. 7 years ago more plaque formed on top causing a 90 degree upward bend. I had surgery (incision and graft) to cure this.
So there is some truth in spontaneous recovery, but in my case it was fairly short lived and the Peyronies Disease returned with vengeance.
Regards
Percival
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 02, 2007, 07:03:53 PM
Thanks for sharing Percival,

That is a perfect example of spontaneous resolution of a lesion. It happens, but some doctors hold onto theories so hard that if something happens that doe not support their theory, they claim it must be something else. Your example is good because it shows that it can appear in different places, with different effects, and different outcomes.

Tim
Title: Re: We Should be More Spontaneous
Post by: Liam on August 02, 2007, 09:36:45 PM
Quote
...but some doctors hold onto theories so hard that if something happens that does not support their theory, they claim it must be something else

Wait!  I'm not a doctor.  I just play a cynical, arrogant one on the forum.   :)  I'm really a Teddy Bear.  ;)

If SR happens so often, why is there no case study out there.  Many doctors love writing that kind of paper.  I've seen phychics and ghost chasers with more clinical evidence.

Percival, 

Anytime someone notices improvement, no matter how short lived, I'm happy for them.  Don't think I'm criticizing you.  Your story is interesting.  It is not proof of spontaneous recovery, though.  The initial condition was in an unusual place for Peyronies Disease.  Could it have been another condition?  If it was, maybe there is a relationship to the Peyronies Disease.  If it was Peyronies Disease, it obviously didn't really go away.   BTW, did the lump get smaller and smaller or was it just gone one day (serious question)? 

This is the closest thing I've heard, though.   :)

Title: Re: Spontaneous Remission ...
Post by: George999 on August 02, 2007, 10:00:36 PM
Liam,

Quote
In this study, Hellstrom  et al. have investigated the efficacy and safety of intralesional IFN-alpha2b in one of the few large-scale, blinded, placebo-controlled studies to address this type of therapy for Peyronies Disease. ... Furthermore, a spontaneous remission rate of 13% and a reduction of pain with the passage of time could confound assessment of the outcome.


http://www.nature.com/ncpuro/journal/v4/n1/full/ncpuro0670.html (http://www.nature.com/ncpuro/journal/v4/n1/full/ncpuro0670.html)

Quote
Spontaneous remission may occur in about half the cases over several years.

http://www.urologyweb.com/Production/Urology_Primer/Reconstructive_Surgery/peyronie%20disease.htm (http://www.urologyweb.com/Production/Urology_Primer/Reconstructive_Surgery/peyronie%20disease.htm)

Quote
There is a plethora of treatments for this condition, telling you all you need to know about their efficacy. Spontaneous remission makes controlled trials difficult to interpret.


http://www.patient.co.uk/showdoc/40001276/ (http://www.patient.co.uk/showdoc/40001276/)

Quote
Certain numbers of cases will have spontaneous remission of the disease process.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=374293&dopt=AbstractPlus (http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=374293&dopt=AbstractPlus)

Quote
Peyronie's disease is one of the interesting urologic entities, whose etiology and pathogenesis as well as its therapy is not fully understood. Changes of collagen metabolism are under discussion, traumatic genesis has been described as well. Spontaneous remission is well known. Therapeutic measures include conservative management with a variety of drugs, each of which is not very effective. Operative strategies aim for correction of symptoms.

http://www.thieme-connect.com/ejournals/abstract/uro/doi/10.1055/s-2001-15940 (http://www.thieme-connect.com/ejournals/abstract/uro/doi/10.1055/s-2001-15940)

Liam, I know you have had no personal encounter with "spontaneous remission", but that does not mean it does not happen.  You can rationalize your way around it all you want, but it is documented in the case of Peyronies, that's the bottom line.  It is easy to become overly negative when ones own condition does not improve.  The RATE of spontaneous remission is subject to debate and conjecture and is probably far less than what some people believe it to be, but it DOES occur.  You have to remember that most guys who experience spontaneous remission will do so early on in the course of the disease and as a result will NEVER seek out this website to post there good fortune.  So it is really not surprising that we never hear of those cases.

- George
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 02, 2007, 10:05:02 PM
I thought I mentioned a new lesion that went away with regular application of iontophoretic verapamil, and VED stretching. It was not spontaneous, but it was improvement.

Thanks to George for mentioning all the regularly reported cases of spontaneous remission - and why shouldn't some things improve on their own?

Liam - I was talking about doctors, not you, although I will admit that you hang on to argumentive points longer than it seems that you should at times. Did you have a couple of mean big brothers growing up that learnt you to always get in the last word??  :P   I did...

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: j on August 02, 2007, 11:27:03 PM
Urologists don't take tissue samples and send them to a lab that could identify the cellular changes associated with Peyronie's.  They rarely even do an ultrasound. So it seems to me that what we're left with, in most cases, is a set of patients having "some sort of hard stuff", composition and cause unknown, that's causing a bend. 

I'm very skeptical of reports of spontaneous remission of Peyronie's Disease.  I suspect they wouldn't hold up, if they could be exposed to the light of real lab work. 

Title: Re: Crappy Surveys vs Empirical Evidence
Post by: Liam on August 02, 2007, 11:31:25 PM
Here lies the truth.  The reason spontaneous combustion remission is reported in the first place (see first sentence - the part about the questionnaire) is clear.  Now read my signature line.  ( The Hellstrom study used this source.  The other papers { my favorite was the "in about half the cases"} cited no source. " ;) )

Quote
The natural history of Peyronie's disease.Gelbard MK, Dorey F, James K.
Division of Urology and Biostatistics, UCLA School of Medicine.

The natural history of Peyronie's disease was evaluated in 97 men by means of a questionnaire. Disease duration ranged from 3 months to 8 years. Questions addressed pain, bending, ability for intercourse, over-all effect of the disease, psychological effects, treatments received and degree of disease progression. Approximately 40% of the patients found pain, bending, ability for intercourse and over-all effects to be unchanged during the course of the disease. Bending and ability for relations worsened in 40% of the patients during the same interval, while only 6% had worsening of pain. Of the patients 77% reported psychological effects due to Peyronie's disease, which improved in 28%, did not change in 36% and worsened in 36%. Over-all, 13% of the patients believed the disease to be one of gradual resolution, 47% believed there had been little or no change and 40% believed that the disease pattern was one of gradual progression. We found no statistically significant association between disease duration and spontaneous improvement in penile bending. A similar lack of statistical significance was found when improvement in a variety of categories was compared in patients who received no therapy versus those who received a variety of conventional medical therapies.

PMID: 2231932 [PubMed - indexed for MEDLINE]


Quote
but it is documented in the case of Peyronies,

It has been reported and cited maybe documented.  That makes it true?  No.  It just means surveys continue to be referenced.

Tim and George,

The two of you are scientist.  Patient surveys may have there place.  But, they are far from empirical evidence.  This is even more true when asking questions about a man's penis and sex stuff :-[ .  Where is one case study with before and after imaging and/or lab work. 

J,

You posted while I was typing.  That is my view exactly.  :)

BTW, No brothers.  One younger sister who was meaner than a snake ;)  (I know she'll never read this  :-X )
Title: Re: Defining Peyronies Disease - Spontaneous Remission
Post by: Liam on August 03, 2007, 10:29:55 AM
Many sites I have visited refer to spontaneous remission happening in the first 6 months.  Others broaden the window to 1 year - 18 months.  Hmmmm.

Considering no objective testing was done (in most cases) and we know how inaccurate feeling for plaque is, what would be the chance at least some of these cases were an injury or another condition which is expected to heal?  Even if the doctor asks if an injury occured would a man, face to face with another man, tell him about a sex related injury?  Some would, but some wouldn't.  Some may not know.  Most would lie to some degree if only for modesty.

I believe (hey, I'm qualified to take a survey) spontaneous remission is a false assumption based on faulty surveys (by their nature), faulty patient history (by its nature), a lack of diagnostic testing and a lack of adequate research.  It may be perpetuated by the improper (but financially necessary) use of diagnostic codes for insurance billing.

It would behove a researcher to go into a new project at least holding out this possibility.
Title: Re: Additional Input
Post by: Larry H on August 03, 2007, 12:48:43 PM
Not having the good sense to stay out of a discussion I was not invited into, I will simply copy, without comment, part of the introduction to a paper titled "Pathophysiology of Peyronie's Disease" by R.B. Moreland and A. Nehra of the Department of Urology and Physiology, Boston University School of Medicine, Boston Mass. and Mayo Clinic Foundation, Rochester, Minn.

Introduction (Partial)

Peyronie's Disease (indurato penis plastica) is an inflammatory condition which is characterized by the formation of fibrous, noncompliant nodules within the tunica albuginea. These plaques impede tunical expansion during erection resulting in penile bending. In some extreme cases, these plaques can induce a collar-like or an hour-glass like appearance in the erect penis. Unlike normal wound healing following trauma, plaques in patients with Peyronie's Disease do not resolve.
Title: Re: Larry - Discussion
Post by: Liam on August 03, 2007, 02:10:27 PM
Pro or con, you views and insights are always welcomed.  No one,especially you, needs an invitation  :).

I hope your "jumping in" encourages more discussion by more members.  We appreciate members opinions even when they are contrary to our own. 

I am of the opinion this topic is worthy of debate and discussion.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: percival on August 03, 2007, 04:22:40 PM
Liam
From what I have read, I agree that plaque around the spongiosum is unusual for Peyronies Disease. However, it started that way - on its own with no trauma involved. I didn't seek medical advice and I had never heard of Peyronies Disease at the time. Although it was worrying - it arrived quite suddenly - it didn't get worse and from what I remember it went again fairly quickly (not overnight though). It went away completely and I still have no plaque there - in fact it is now one of the few places I don't have plaque!
12 - 18 months passed before further plaque formed on the left. It was diagnosed by my GP as Peyronies Disease and theen the saga of Potaba and Viamin E started.
Percival
Title: Re: Percival's Condition
Post by: Larry H on August 03, 2007, 05:43:44 PM
Percival:

Is it possible that the first occurrence that disappeared and your later Peyronie's condition were totally unrelated?

Let me say here that I neither endorse or reject the matter of spontaneous resolution. I am simply raising questions and posting data to assemble more pieces of the puzzle.

Larry
Title: Re: Spontanious Remission of Peyronies Disease
Post by: Hawk on August 03, 2007, 09:29:09 PM
I hesitate to post in behalf of another because i feel it is not exactly my place to do so.  I also have enough court experience to know that the pitfall with hearsay testimony is that you cannot cross examine the source.  Nevertheless, Joshua who is an instrumental founder of this successful forum and the PDS, has told me  on a few occasions that he was very close to his original self after sudden and significant deformity for about 2 years.  He indicated the reversal was quite sudden as i recall.

I have asked him to post this account and he has yet to do so.  He seldom logs on in recent months.

Did he try many non-conventional treatments?  Answer: yes, but any doctor would call it spontaneous.  Certainly spontaneous could never be discounted on the basis of nutritional intake (including diet).  We all eat something.

Also to the point of tissue examination; guys we cannot have it both ways.  If a doc said your plaque is gone you are cured, but you were still a pretzel,you would contend that the treatment was totally ineffective.  You would contend that a cure is indicated by reduction in deformity ONLY.  You cannot at the same time reject recovery on the basis that the cells are not proven normal with a tissue examination under a microscope when in fact, the deformity is gone.

Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 03, 2007, 09:44:22 PM
I have decided to argue a new topic. I think that only one angel can fit on the head of a pin. I am sure I am right. If you argue that more than one can fit, I am going to argue that - by definition - it is either not a pin, or not angels. Nothing anyone ever says will convince me otherwise. But when we are all done arguing, we can agree that we will have learned so much about theology that it was all worth it.

If we are going to argue that Peyronie's can never heal spontaneously, then why do any of us think that anything we are going to do, or try to do, are going to make it heal?

Spontaneous healing is more common than the alternative. For goodness sake, Hippocrates said "A wound is a wondrous thing - left alone, it will heal itself". That is how long we have known about spontaneous healing.

If the world is not black and white (and it is not), then why would anyone think that physiology is always going to be all or nothing?? Of course, if we argue that Peyronie's can never heal on it's own, then by definition, anything that heals was not Peyronie's. But that does not really cut it for me - it defies logic and my own understanding of physiologic processes. Some things get better - and some of the healing is even  ::gasp:: not understood by doctors!!!

If someone develops a dent, or a kink, or a palpable plaque in their penis, accompanied by pain and deviation, it would sure sound like Peyronie's disease to me. If they got better, I would say they were lucky, not that they must have had something else. But the fundamental truth is that our bodies are in flux, and the conditions to form scar may change into conditions that favor healing. It may have to do with something like a balance of inflammatory mediators, or co-morbidities like diabetes or vascular disease coming under better control.

Most studies of Peyronies disease that have used placebos have demonstrated some degree of improvement in the placebo group. I think of those subjects as men who were simply being followed closely by doctors during a defined period of time with attention being paid to their anatomy. They demonstrated spontaneous improvement (or perhaps healing) - some cases of resolution have been thus reported too.

So it is not the case that spontaneous resolution or healing has not been reported. Rather, it has been reported in virtually every large study done (meaning studies using more than 25 subjects). It seems odd to argue that it is impossible, for I see no physiologic or scientific basis for the statement that it does not heal - nay, I see no support for even the notion that lesions cannot spontaneously heal.

Unless we chose to redefine Peyronie's as an irreversible lesion when most discussions state that some spontaneous resolution does occur, I see no reason to keep arguing that point.

Tim
Title: Re: Tim - A logical Argument
Post by: Hawk on August 03, 2007, 09:50:22 PM
Thank You!


PS: Exclusion by Definition- A tactical logical fallacy
Title: Re: SR Could Happen?
Post by: Liam on August 04, 2007, 12:56:03 PM
I have heard of spontaneous remission of most of the known diseases including cancer.  I guess Peyronies Disease is no different.
I just don't see doctors tell patients with cancer, "Let's wait 6 months to see if it goes away by itself.  Here, take these vitamins."
I will amend my public  ::) view to say spontaneous remission may happen, although I have seen no objective evidence to support the theory. 

I'll, also, go out on a limb and hypothesize cases of Peyronies Disease with no palpable plaque in men under 25 have the highest rate of spontaneous remission and occur in the first 6 months.  ;)

Quote
If we are going to argue that Peyronie's can never heal spontaneously, then why do any of us think that anything we are going to do, or try to do, are going to make it heal?

Tim,  This is a non sequitur.   We do it for the same reason we treat any other disease.  Thats the reason you treat it, because you don't believe it will go away on its own.  Like antibiotics taken for infection.

Quote
But the fundamental truth is that our bodies are in flux, and the conditions to form scar may change into conditions that favor healing. It may have to do with something like a balance of inflammatory mediators, or co-morbidities like diabetes or vascular disease coming under better control.


That explains how it could happen and is plausible, not that it does happen and is a fact.

Quote
Unless we chose to redefine Peyronie's as an irreversible lesion when most discussions state that some spontaneous resolution does occur, I see no reason to keep arguing that point.


I just said it does not heal itself, not that it is an "irreversible lesion".

Hawk,

If a treatment reduces the curve, it is effective.  If it eliminates pain, it is effective.  If it improves ED, it is effective.

If it got rid of the fibrotic tissue, I wouldn't have the other symptoms.  Before anyone says anything, I know permanent damage could remain.  I can't imagine a curve remaining, though. ???

Quote
You cannot at the same time reject recovery on the basis that the cells are not proven normal with a tissue examination under a microscope when in fact, the deformity is gone.

Your statement is true as stated.  Change the word recovery to cure and it becomes false. 

I know deaf people who function as if they had normal hearing with a cochlear implant.  They are still deaf.


Spontaneous remission is a false assumption based on faulty surveys, faulty patient history, a lack of proper diagnostic testing and a lack of adequate research.  It may be perpetuated by the improper (but financially necessary) use of diagnostic codes for insurance billing.  It is also perpetuated by medical researchers quoting and requoting faulty research.

Is this not, at the very least, plausible?   We all know 50% SR is not right.  But, that was considered fact, and still is by some, for the longest time.  Now the percentage and the conditions for SR reported in the literature vary to the point of being meaningless.

Guys, SR "could" happen.  Just don't hold your breath while you wait.  And, if your doctor tells you to wait  6 months or a year to see if you spontaneously heal, pull as much money out of your pocket as you can and ask him to bet on it. ;) 






Title: Re: Spontaneous Remission
Post by: Hawk on August 04, 2007, 01:26:39 PM
Liam,

While this proves nothing, neither does the opinion you expressed.  I only counter one opinion with an expert opinion. 

A peyronies specialist's words to me when I was at the 6 month mark and we were discussing deformity.  From this point, over the next 12 months 20 percent will improveme, 20 percent will get worse and 60 percent will stay about the same.  He did not claim that all of the 20% would experience full remission but that maybe half of those would.

These are the expressed observations from a doctor that i think sees between 5 and 10 new Peyronies Disease patients per week.  You got to wonder why he would say that.  These are the only choices I can come up with:

It is an accurate statistic in his practice.
He lies to make men feel better during the initial stages
He cannot tell Peyronies Disease from other maladies that affect the penis
He gets confused about whether a deformity improves
He bases his statements solely on what he read on the internet or on hearsay

While any of these may be plausible if a patient is dealing with a general practitioner or uro with no Peyronies Disease experience, four of the five choices are difficult to imagine from an Peyronies Disease specialist.  In fact, four of the five would constitute GROSS misconduct (incompetence, negligence, or fraud) IMHO
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 04, 2007, 01:41:41 PM
Liam, you seem to be arguing a point for no reason at all.

""Tim,  This is a non sequitur.   We do it for the same reason we treat any other disease.  Thats the reason you treat it, because you don't believe it will go away on its own.  Like antibiotics taken for infection."

Good example. For instance, in middle ear infections, almost ALL such infections get better without antibiotics. It is standard of cae, though, to treat to prevent the 0.5 - 1.0 percent that might go on to develop life threatening mastoiditis. But most such infections get better on their own.

When we give antibiotics, we may be doing something novel, or trying to nudge the body towards doing something it is *supposed* to do on it's own. I do believe that if we can make some Peyronies better with vitamin E, then  it is equally likely that some can get better on it's own.

You state: "I have seen no objective evidence to support the theory"

How do you explain improvement, then, in placebo groups?

There are not good enough demographic data, there are not good enough longitudinal data, and there are not good enough data on anything about Peyronies Disease for you to make such categorical statements. Moreover, given that some men do improve over time (I don't know if it gets back to normal), then that is why a urologist would suggest waiting before  acting. And if I thought the only thing I could offer was surgery, I would want a man to be used to having it, convinced that nothing else was going to work, and sure that it would not have gotten better on it's own. Based on the surgerical option being the only viable option, that makes sense.

However, most urologists are not scientists, and they have neither the interest, or time and resources to investigate the nature of Peyronies Disease. So they offer surgery. But gradually, as we learn more about the nature of the biochemistry of this disease, we shall see medical options being offered up front, with surgery being considered a last resort.

Finally, no one wants to wait and see for six months with cancer because it is life threatening. Since Peyronies Disease is not, it is reasonable to wait and see.

Tim

Adddendum: This discussion now has entered the realm of stubbornness (me included) and no longer seems relevant to working on understanding the nature of this illness. Therefore I am withdrawing from any further discussion on this topic.
Title: Re: SR Could Happen?
Post by: George999 on August 04, 2007, 03:03:06 PM
I just said it does not heal itself, not that it is an "irreversible lesion".

Liam,  NONE of us would have any problem with that statement.  It is your private definition of "spontaneous remission" that is at the core of this whole debate.  You seemingly define "spontaneous remission" as "healing without cause" that is purely "coincidental" and "just happens for no reason".  Even for those of us who believe in miraculous healing, we generally attribute the cause as being the direct activity of Almighty God.  Nothing just happens, everything as some causal force behind it.  But in medicine, not all of those forces are fully understood.  But they sometimes come into play in ways that we simply don't fully comprehend or understand.  And, NO, that does not mean that doctors should "just throw out some vitamins" and see what happens.  But you have to be aware that 1) for a long time now, in terms of Peyronies, Vitamins were really all the docs had.  And 2) there is also an element of practicality.  Like when you call the doctor in the middle of the night to complain that you have a temperature of 102.  He or she will likely not tell you to run right down to Emergency, but to take some Tylenol and see what happens by morning.  That is simply good judgment, just like it is good judgment in the case of Peyronies not to schedule surgery at the point of diagnosis.  Of course some doctors do carry passivity to an extreme, and they do it with excessive waiting for spontaneous remission with a lot more afflictions than just Peyronies.  That IS bad judgment on their part.  But the fact is that in the case of almost every human affliction, some people die even after receiving treatment while others just seem to get better even in some cases without treatment (there are even KNOWN cases of people with HIV who retain their health indefinitely).  This has to lead us to examine and consider the underlying biological environmental factors that might be affecting the course of the given affliction.  That is where we are not investing enough effort.  In some cases it might be pure genetics, in others diet or exercise, plus a myriad of other possibilities.  Once we know WHY some people get better as opposed to others who don't, that is really useful information IF we can pin it down.  What really troubles me about your position is that it seemingly excludes the possibility of such underlying forces.  Once you define it down like you did in quoted statement, it becomes clear that that is NOT what you are saying.  But the fact that you define "spontaneous remission" in such an unorthodox way is makes things very confusing.

Quote from: Wikipeda
Spontaneous remission is a catch-all expression by the medical faculty for any healing that is not due to medical treatment. Cases of spontaneous remission are a good example of statistical outliers due to the large numbers of individuals alive and the corresponding incidences of disease. The term anecdotal evidence is often mentioned by medical researchers in conjunction with cases of spontaneous remission, since such cases seldom are part of a formal scientific study following scientific methods, but are instead described by those who directly experienced the healing in the form of testimony.

Traditional medical practice ascribes the effect to rationally explainable influences that simply lack observation. Advocates of faith healing and alternative medicine contend that the expression is a convenient means for dismissing alternative sources of efficacy.

- George
Title: Re: An additional Question
Post by: Larry H on August 04, 2007, 03:48:50 PM
I really don't want to prolong this debate because I'm not sure it's of real importance, or to put it another way, if it does it does and if it doesn't it doesn't. Regardless, it's not going to significantly change anything with the disease or how we approach it.

With that said I must ask another question, and the question is not meant to be argumentative, and in fact I'm not pro or con on SR as I just don't really know. However, I think this is a legitimate question and in one way goes to the heart of the issue.

Tim, you said the following: 

"Spontaneous healing is more common than the alternative. For goodness sake, Hippocrates said "A wound is a wondrous thing - left alone, it will heal itself". That is how long we have known about spontaneous healing."

No one with a brain could argue with that statement, but when a wound heals, if it is of any size it leaves a scar. Now scars are permanant, they don't go away. Peyronie's plaque is also referred to as scar tissue, so for instance, if it's the same as a dermal scar it's there for good. The wound heals but the scar stays. Where is the fallacy in all of this?

Larry
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: George999 on August 04, 2007, 04:35:22 PM
Larry, do all wounds result in a scar?  I certainly have experienced some significant wounds in my lifetime that have left no visible scars.  Of course, following Liam's logic, perhaps someone with an electron microscope could detect some sort of remaining abnormality.  And actually, I have a burn scar on the back side of my left hand caused by hot, liquid plastic, and at this point, all that is left of that scar is a slight discoloration of the skin.  But it is functionally, in terms of suppleness and elasticity, totally indistinguishable from the surrounding tissue.  So if you are trying to say that scars NEVER heal, I would question that proposition also.  In my case the burn scar healed to the degree that I am completely satisfied.  I would certainly like to see those kinds of results with my Peyronies, spontaneous or otherwise.  - George
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Liam on August 04, 2007, 04:56:54 PM
Quote
Regardless, it's not going to significantly change anything with the disease or how we approach it.
Larry,
I believe we must be able to properly identify the disease before we can study it.

Quote
What really troubles me about your position is that it seemingly excludes the possibility of such underlying forces.
Not at all.  If we don't do something different (drugs, diet, nutrional supplements, VED), our Peyronies Disease will not get better on its own.  As you know its all about the chemicals.  If its a pill or a slice of orange, its all chemicals.  Changing personal environment can't be excluded from consideration.

Quote
Once we know WHY some people get better as opposed to others who don't, that is really useful information IF we can pin it down.
Suppose this small percentage had a "normal scar" in their penis.  Maybe they had a trauma.  Can you have a normal scar that is not Peyronies Disease ( see the ISS {atypical Peyronies Disease}research)?  Why not?  Would it not appear in younger men and tend to improve greatly in the first 6 months?
We all have seen Peyronies Disease descibed as the scarring process gone haywire.  My thought is scarring process (normal) gone haywire (Peyronies Disease).

George, I think we disagree more on the language than the concepts. :)

My only problem with docs and vitamin e is they know you'll be back and you will still have Peyronies Disease.  They don't explain nutritional programs or anything like that.  It is  what they were taught to do.

Quote
How do you explain improvement, then, in placebo groups?

Tim,
Normal variations.  I've seen improvement (remember I told about taking prednisone) and set backs (I told about breaking out the super stretcher).  There seems to be a baseline or a mean point.  The variations could be due to inflamation.  I don't know.

I agree waiting on surgery for all the reasons you mentioned except that if you leave it alone, it will heal itself.  

Hawk,
Urologist are as stumped as we are. Maybe more so.

Title: Response to Larry
Post by: Tim468 on August 04, 2007, 05:02:16 PM
Larry - George answered your question well enough for me. I too have an old scar on the back of my hand that I can no longer differentiate from surrounding skin. It is functionally normal.

My thought about Peyronies is that it is more like a keloid scar - a scar itself that is abnormal (ie not a normal scar). If one suffered an injury of some sort to the penis (ie an acute bend during intercourse) that led to trauma (ie began a cascade of inflammatory events, with leaking of blood into tissue (bruising), migration of inflammatory cell types, e pression of more chemokines and chemotactic factors) that i nturn led to a gradual resolution - I would call the "normal". If it stopped resolvingm and started to instead heap up collagenous tissue and lead to contraction of the tissue such that it lost it's elastic properties, I would call that Peyronie's disease.

But I think that there have to be places in between the two extremes - complete resolution of an injury, and continued inflammatory events leading to scarring - for instance, slow resolution, or stopping just shy of creation of a palpable plaque.

The reason this is relevant to me is that I do not have much in the way of palpable plaque, but I have denting and deviation, and that is due, IMHO to a lack of heaped up tissue, but a presence of something abnormal in my tunica that prevents normal stretch.

Tim
Title: Re: Keloids
Post by: George999 on August 04, 2007, 05:19:39 PM
Just some thoughts about keloids.  My wife is prone to keloids and ends up with them with practically every surgery no matter how minor (and she, unfortunately, has had to endure a lot of surgeries).  And yet in some cases they simply go away after the passing of time leaving nearly normal skin tissue.  In other cases they persist and in some cases even worsen over the passing of time.  The great question is "What is driving the ebb and flow of this process?".  If we have the answer to that question, we know how to control the process and achieve a pleasing result.  My interest in the Peyronies process follows that same pattern.  If we can identify what makes it better, that might be an opportunity.  In fact, as another poster commented some time ago, even knowing what makes it worse might well provide clues as to what we can do to make it better.  The great thing about this community is the fact that we a blessed with a diversity of perspective (Liam, Tim, Hawk, myself, for example) and we are trying different things to "make it better".  So far we have had limited success.  But one just never knows when someone here, perhaps the person we might least suspect, might hit on something that could turn out to be profoundly effective.  Science is all over this thing of fibrosis.  A solution cannot be that far off and it is just these kinds of debates that will generate the interest that will move us all toward a solution.  - George
Title: Re: Fibrosis Remaining
Post by: Liam on August 04, 2007, 05:26:02 PM
Yes George.  Hats off to this great community here.

Now my question.  If the process turns off, will the fibrotic tissue and/or plaque stay forever?
Title: Re:Additional Thoughts
Post by: Larry H on August 04, 2007, 05:57:04 PM
I must say I was taken back by the reply that scars go away. I really thought what I would hear as a response was that tunical scars or plaque from Peyronie's was different from normal injury or surgical scars, and Tim did touch on that.

I admit that scars change with the ageing process but they don't go away. I have scars from childhood that are well over 50 years old. My wife still has scars from two births by Cesarean section. People have been known for their scars, think of the mobster scarface or the saying scared for life. In any case when discussing SR for Peyronie's we are not talking 30 to 40 years, we are talking months or several years at best.

The problem with discussions like this one is that they can quickly get out of focus.

Larry
Title: Re: Fibrosis Remaining
Post by: George999 on August 04, 2007, 06:05:14 PM
Now my question.  If the process turns off, will the fibrotic tissue and/or plaque stay forever?

The normal process is always one of healing.  Sometimes the healing processes of the body are not sufficient which is why we find ways to help them along with everything from antibiotics to surgery.  But the process that I was referring to was an alien process, one that really doesn't belong there.  It is the ebb and flow of this process that is leading to the failure to heal.  This is the process we need to try to understand and counter.  So in answer to your question: If the process turns off, normal healing will proceed eliminating fibrosis.  The problem is we have not yet really identified it, let alone found a the way to turn it off.  But there are tantalizing clues out there.  Aphro just pointed out one on the Supplements thread in the form of a study linking blood sugar levels to TGF-beta-1 activity.  This demonstrates a direct link between TGF-beta-1 and Metabolic Syndrome.  My speculation is that Metabolic Syndrome itself is at the root of a host of human suffering and that fibrotic diseases likely are part of that whole ball of wax.  This in turn is connected to high fat diets and the limitations our livers face in breaking down those fats and in effect, supplying our bodies with energy (this is how people become overweight ... their livers are overloaded and become progressively unable to adequately convert fat to energy and end up simply storing the fat instead, the resulting insufficient supply of energy causes these people to experience increased hunger causing them to eat even more, further overloading their livers).  How rapidly we can produce the enzymes needed is largely based on genetics, and without adequate enzymes the process begins which eventually impairs the body's capacity to heal.  Of course, if and when it reaches the level of full blown diabetes, the impairment of healing becomes very pronounced.

Everything we have been pursuing so far has been based on various forms of direct attack on Peyronies itself (or perhaps fibrosis in general).  I am trying to set out to explore a new approach.  I want to target what I am speculating is the underlying process, Metabolic Syndrome.  I really want to see what happens to the Peyronies if the last vestiges of Metabolic Syndrome can be wiped out.  I believe there is enough knowledge out there to achieve that.  It may be just another rabbit trail.  Who knows?  But I am determined to try to test it out.  That is why this fixation over an underlying process is so important to me right now.  - George
Title: Re: Larry - Precursor, Peyronies Disease, or Neither?
Post by: Hawk on August 05, 2007, 07:01:33 AM
Time to change the subject I think.
Larry posed a good question that got no response in the heat of the previous endless debate.

However, there is one solid fact of importance and that is that the study indicated that 22% of the cadavers autopsied had tunical lesions. Now when I first read this my take was that these 22 men had undiagnosed Peyronies Disease, but when thinking about what asymptomatic, fibrotic lesions means I'm not so sure. My laymans simplistic definition would be "a non-diseased abnormal change to the tunica caused by trauma" (this also squares with the Lue paper suggesting the lesions developed from the natural course of aging and sexual activity). I stand to be corrected if I'm off base with my definition, but if I'm substantially correct does it mean that these men did in fact have undiagnosed Peyronies Disease, or the precursor to Peyronies Disease. Any thoughts?

Did those 22% of the walking wounded have non-symptomatic Peyronies Disease (progressive or stable), precursors to Peyronies Disease (progressing to Peyronies Disease or stable), or neither (just some wear and tear phenomena)?

It is difficult to imagine 22% progressing to Peyronies Disease, however since we do not know the ages, were they 90 yrs old and would have progressed in another 15 years had they lived?  Were they sick as opposed to dying in an accident?  If ill, ,maybe their illnesses kicked off inflammatory TGF-B1 factors and that group of men actually did have Peyronies Disease near the end of their lives. 

This is pretty important stuff to consider or find more info on if possible.  It also points to why we need more awareness and research.
Title: Re: Trauma
Post by: Liam on August 05, 2007, 12:09:55 PM
Its hard to imagine a man making through life without a few dings on his tool  ;).  They don't all have to be Peyronies Disease.  They don't all cause a bend, but some might.  I have been saying this for a long, long time and being POO-POOed for it.

I can't believe 22% of the population have Peyronies Disease.
Title: Re: 22%
Post by: Larry H on August 05, 2007, 12:28:58 PM
Liam:

I think to keep that 22% in perspective it should be looked at as over the course of a mans life. The men examined could have been in their 80's or even 90's. The incidence of the disease grows as men age, and even may appear after a man ceases to be sexually active (does that ever happen ;)).

Hopefully someone like Tim will advise if my understanding of the definition of "asymptomatic, fibrotic lesions is correct. The key as I see it is if these lesions are non-diseased and from trauma as the Lue paper suggests, then it points directly to micro trauma as one cause of Peyronies Disease especially in older men. Please note I said one cause, as I'm sure there are other causes, especially in younger men.

Larry

Title: Re: Link to Autopsy study
Post by: Liam on August 05, 2007, 12:37:31 PM
Larry, will you post a link to the Autopsy study?  :)
Title: Re: Liam
Post by: Hawk on August 05, 2007, 01:29:11 PM
Its hard to imagine a man making through life without a few dings on his tool  ;).  They don't all have to be Peyronies Disease....

I can't believe 22% of the population have Peyronies Disease.

Liam,

Like Larry, I am unsure of some terminology here.  Would the phrase "fibrotic lesions" describe normal scar tissue from some casual dings?

Also we need to keep in mind that this study did not sample a random sampling of the population.  It sampled dead men.  Presumably they were sick and/or old before they were dead. If they had diabetes, cirrhosis, and a host of other fibrotic conditions that killed many of them, then for that sample, maybe 22% is not high.  Too many unanswered questions that are VERY important concerning this study.

How hard would it be to conduct such studies on a wide range of autopsies including some that only included accident victims.  Yet we get no such studies.
Title: Re: Asymptomatic, fibrotic lesions
Post by: Larry H on August 05, 2007, 06:13:16 PM
Hawk:

The key as I see it is "asymptomatic" which is defined in my Webster's as non-diseased. So the statement from the Lue paper quoting the study says; "In an autopsy study of 100 men who had no known Peyronie's Disease 22 had asymptomatic, fibrotic lesions of the tunica albuginea". the Lue paper then goes on to say "suggesting that in the natural course of aging and sexual activity these asymptomatic (non-diseased) lesions may develop". This sounds like micro trauma to me unless these lesions could be something else not related to Peyronies Disease. That is what I would like to have a discussion on, especially from someone like Tim who I know understands this far better than I do.

Larry

Title: Re: Larry
Post by: Hawk on August 05, 2007, 08:22:03 PM
Larry,

I always considered asymptomatic as meaning "without symptoms" meaning that the symptoms have not manifested themselves up to this point or at this moment, not "without disease".  This has only been my impression and I may be wrong.

This data is so sketchy I also do not see how Lue could conclude the cause is trauma or micro trauma.  Why could it not be normal aging?  Why could it not be from inflammatory responses at the end stages of life.  In fairness I guess Dr, Lue suggests it may be micro trauma rather than concludes it is micro trauma.  I guess no one can really argue with a non-committal statement like "suggests it may be ".
I even wonder how they know how symptomatic it was.  Do they know if the men experienced any pain?  Did they induce a saline erection to see if deformity was present, or could they establish whether there was any ED or loss of size?

I am extremely interested in this study but I am not sure how much mileage we can get on this without more details.
Title: Re: Trimix injections
Post by: Liam on August 06, 2007, 07:14:57 AM
File this under "for what its worth".  I don't necessarily buy into the conclusions or inferences.  You decide.  The parenthetical comment is his not mine. 

Quote
Ask the Experts about Erectile Dysfunction
from Medscape Urology

Side Effects of Trimix Therapy

Question

I have a patient who is using Triple P as intercavernosal injection for erectile dysfunction. He found an article describing possible side effects (not Peyronie's) such as scarring and fibrosis. Is there evidence or concern for this outcome?

Fred Freedman, MD

Response from Wayne J. G. Hellstrom, MD, FACS
Professor of Urology, Tulane University Medical School, New Orleans, Louisiana; Chief, Section of Andrology and Male Infertility, Tulane University Hospital Medical Center, New Orleans, Louisiana

Over the past 2 decades, self-injection therapy has proven to be both safe and efficacious, and is considered the best second-line drug therapy for the management of erectile dysfunction. The 3 vasoactive agents commonly used alone or in combination are papaverine, phentolamine, and prostaglandin E1 (PGE1 alprostadil).

PGE1 (Edex/Viridal; Schwarz Pharma; Monheim, Germany, or Caverject; Pharmacia Corporation; Peapack, New Jersey) is the most widely used vasoactive agent because it is FDA-approved and the most researched. In the event of pain, which occurs in 30% of patients taking PGE1, or inadequate penile rigidity, clinicians may resort to off-label synergistic combinations, such as papaverine and phentolamine (bimix), or papaverine, phentolamine, and PGE1 (trimix).

Fibrotic reactions with intracavernous injection therapy have been observed since the early 1980s. A variety of reactions, ranging from subcutaneous nodules, intracavernosal fibrotic areas, and penile plaques, have been reported. The occurrence of fibrotic reactions with the use of papaverine alone or papaverine/phentolamine combinations has ranged from 0.5% to 31% and appears to be correlated with the number of injections and duration of therapy.

In addition to instructing patients to alternate the side and site of injection, there is a growing body of evidence that suggests that PGE1 causes less fibrosis. It is postulated that fibrosis is caused by production of key cytokines, with transforming growth factor beta 1 (TGFB1) being the most important. Of significance, recent studies have demonstrated that PGE1 suppresses the production of TGFB1, reducing the amount of fibrosis.

Notwithstanding, patients on trimix combinations need proper instruction on the penile injection technique and routine clinical follow-up to identify new onset of fibrosis. In most cases, penile nodules that occur with injection therapy disappear within a few months of stopping.

Posted 09/25/2002

--------------------------------------------------------------------------------
Suggested Readings
Lakin MM, Montague DK. Pharmacologic erection program. In: Hellstrom WJG, ed. The Handbook of Sexual Dysfunction. Lawrence, Kansas: Allen Press, Inc; 1999:70-74.

Moreland RB, Traish A, McMillin MA, et al. PGE1 suppresses the induction of collagen synthesis by TGFbeta1 in human corpus cavernosum smooth muscle. J Urol. 1995;153:826-834.

Shabsigh R. Intracorporal therapy. In: Mulcahy JJ, ed. Male Sexual Dysfunction: A Guide to Clinical Management. Totowa, New Jersey: Humana Press; 2001:245-251.

Medscape Urology 4(2), 2002. © 2002 Medscape


Source: http://www.medscape.com/viewarticle/441434
Title: Re: Liam - Trimix
Post by: Hawk on August 06, 2007, 08:04:52 AM
Liam,

I find little to disagree with in Dr. Hellstrom's comments. I think it is an informative piece.  It is not clear to me why it is posted under this topic however.  What am I missing?
Title: Re: Trimix Comments
Post by: Liam on August 06, 2007, 09:24:06 AM
They are concluding the fibrosis brought on by trimix injections are not Peyronies Disease and will go away on their own most of the time.

I thought you would be the first to object to that characterization.

This lets me know professionals believe there can be fibrosis in the penis brought on be trauma that is not Peyronies Disease and is prone to self healing.  I've never seen it stated this clearly.
Title: Re: Liam - Trimix
Post by: Hawk on August 06, 2007, 10:06:44 AM
Liam,

I think this is a great piece for several reasons.  The main one is that such a respected doctor as Dr. Hellstrom acknowledged the growing body of evidence that Papaverine found in trimix and bimix causes fibrosis in .5% - 30% of cases based on frequency of injections and duration of treatment.  This is a huge range but i will take what I can get on this issue.  You were also sharp to pick up on the use of the term fibrosis as used by these different doctors.  After reading this I am not sure I read this as you do. 

First, it was not Dr. Hellstrom that referred to it as "not Peyronies Disease", it was the urologist deferring to Dr. Hellstrom and asking Dr. Hellstrom a question.

Dr. Helstom does refer to it as penile fibrosis resulting from TGF-B1.  He never said all or some of this TGF-B1 fibrosis was not Peyronies Disease, nor did he say that trimix injections cannot result in Peyronies Disease.

Unless someone has a definition of Peyronies Disease that can be applied only to some cellular examination of a biopsy, I see no way one could possibly differentiate between TGF-B1 induced Peyronies fibrosis and TGF-B1 induced NON-Peyronies fibrosis.  I have never heard of a microscopic examination of fibrotic penile tissue in anything other than a cadaver or a surgical patient so how could such a call possibly be made?  I say it can't!  If it can, then the doctors are keeping both the diagnosis and the means of diagnosis a deliberate secret, which is obviously not the case.

I think it may be more accurate to conclude that Dr. Hellstrom is being asked a good question with a flawed statement tucked into the question.  I think rather than a long protracted discussion of that aspect of the question Dr. Hellstrom proceeded to explain the incidence of TFG-B1 fibrosis from injections.  He also concluded that when the this trigger for the TFG-B1 is removed that the fibroses often (his words were usually) self correct after months.

On a personal note I will add my firsthand account that I injected bimix 2X per week for 8 months.  I developed fibrosis at the injection site and on the underside of the shaft below the injection site.  It has now been about 30 months since I stopped injecting and if anything, my fibrosis is progressive to this date.  Can someone tell me that is TGF-B1 induced NON-Peyronies Disease fibrosis?  What is the test or the basis?  Dr. Mulhall told me it was Peyronies fibrosis. 
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 06, 2007, 11:59:32 AM
I think of the injection as the trigger, and the development of Peyronies as the process that is triggered. Like an acute injury, the trigger from an injection may be expected to cause a lesion in some men, and not in others. There are no data regarding spontaneous resolution of such injection-triggered lesions that I am aware of. Dr. Hellstrom seems to be speaking from experience in this Q and A piece. Unlike a peer reviewed article, one can speak directly from experience. However,m there is a very real risk that anyone wll misinterpret reality based on their belief system. That is why we do prospective blinded studies.

For instance, those who developed lesions that did not resolve spontaneously, might fail to return to see him (blaming him) and thus he may not be aware of how many really do not resolve. But again, he is clearly identifying this as a process that does not resolve in all men - and he would probably call it Peyronie's.

As for Larry's comments on the autopsy study, I have it somewhere in a file, though not on my computer. My recollection is that these men did not have Peyronie's identified on their problem list at the time of death. I do not believe that means that they were all thus "asymptomatic". It is possible that they were "undiagnosed". As I stated earlier, they may have not sought help for deviation or ED because of the time they grew up in. It is also possible that they had ED and did not know they had such lesions. Overall, given the presumed older ages, and the comorbid disease states, it seems quite possible that some men had disease and did not know it, as they didn't get erect (enough) to even know it.

This last notion seems even more possible if we think of Peyronies as more likely to progress if one does not "use it". Through stretching and oxygenated blood flow, I think that the health of the tunica is enhanced by regular erections (if not sex). I think it is quite possible that the incidence increases (perhaps even rapidly) as men enter their 80's and 90's.

Tim
Title: Re: Hawk
Post by: Larry H on August 06, 2007, 12:20:26 PM
Hawk:

You are correct, I read the definition wrong, it is "no symptoms of disease".

As far as micro trauma, if you read through my post again that was what I said it seemed to indicate, not Lue in the paper. Lue said "suggesting that in the natural course of aging and sexual activity these asymptomatic lesions may develop". I'm saying that to me this is another indicator that in older men micro trauma is a prime suspect. As tissue ages it becomes less elastic and sexual activity may result in micro trauma to the tunica starting the out of control wound healing process we call Payronie's Disease. In your post you mention "inflammatory responses", well you probably would have an inflammatory response to micro trauma.

Keep in mind that I'm only saying that this is one possible cause. Such things as genetic predisposition also seems to be a suspect, especially in younger men.

Larry
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Liam on August 06, 2007, 12:24:10 PM
Quote
It has now been about 30 months since I stopped injecting and if anything, my fibrosis is progressive to this date.  Can someone tell me that is TGF-B1 induced NON-Peyronies Disease fibrosis?  Dr. Mulhall told me it was Peyronies Disease.
 
I think it may not be in some and may develop into Peyronies Disease in others (my opinion only). 

The doctor asking said not Peyronies Disease, and Dr. Helstrom did not refute it.  When answering he called it, "penile nodules that occur with injection therapy".  He could have added "may be P D" or "may be related to P D", but didn't.

The language (or what he didn't say) indicates a diagnosis is not always clear.   And even if it were, the prognosis is not.  Let's say. for the sake of discussion, two people start with identicle fibrotic lesions from trimix (or other) injections.  One progesses and one heals.  This indicates two processes at work.  We all feel comfortable saying Peyronies Disease is the process more than the amount of plaque or degree of curve.

For the record, of course sticking a needle in your penis can cause trauma which may initiate the process of Peyronies Disease.  The fact your plaque is at the injection site should (SHOULD) be an obvious indication of this to the medical community.  I hope doctors start to discuss the possibility of fibrosis and Peyronies Disease with their patients injectin their penis.

BTW, I think I may make an appointment with Dr. Hellstrom at Tulane.  I can do some Mardi Gras shopping in Jefferson Parish and Slidell and pick up a muffaletta and a Dixie Beer from the Central Gro. in the French Quarter while I'm there.  ;)
Title: Re: Great Discussion - Great Members
Post by: Liam on August 06, 2007, 09:02:39 PM
I just want to say in public what has been said in private.  This topic is HOT.  Opinions are strong and may never be changed. 

At this point many forums have members who resort to flaming and other nastiness.  But, not this one.  We all respect each other and by doing so learn something in the process.  And, we don't have to worry about tiptoeing around subjects.

I'm saying this to let everyone in this discussion know how much I love to read ALL the opinions (in all topics) and appreciate the effort it takes to give considered responses (which I consistently see here).  You guys are great!

OK!  Now I know that doctor shouldn't have changed my meds!  ;) 

Thanks,

Liam
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Larry H on August 06, 2007, 09:51:08 PM
Liam:

You are one articulate, and understanding man!!!

Larry
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on August 06, 2007, 09:58:59 PM
Let's say. for the sake of discussion, two people start with identicle fibrotic lesions from trimix (or other) injections.  One progresses and one heals.  This indicates two processes at work.

Really ???  Do I understand you to say that If two people start with the same clinical presentation, and then progresses differently that it means they had different diseases  ??? 

In your example you maintain that those that got better after injection did not have Peyronies Disease.  Is this again based on the fact they did got better, exclusion by definition (if it gets better it cannot be Peyronies Disease) certainly there was no other data to eliminate it from being Peyronies Disease.

Title: Re: Normal and Abby Normal: My Ideas Clarified like Butter
Post by: Liam on August 06, 2007, 10:53:27 PM
Quote
Really   Do I understand you to say that If two people start with the same clinical presentation, and then progresses differently that it means they had different diseases   


Not exactly what I meant....I think one had a normal response and the other had Peyronies Disease.  To understand my view, consider a hemophiliac receiving a cut and someone else receiving the same cut.  Different responses to the same trauma.  I think the key is "abnormal healing".

No analogy will fit perfectly, but you understand my point.

Quote
if it gets better it cannot be Peyronies Disease
 

You see, the way that is worded I cannot agree.  If it improves without treatment, it probably wasn't Peyronies Disease.  You should not define the case out by the fact it improved.  It should not have been defined in until the condition became progressive over a period of time.  The amount of time and amount of progression should have been statistically calculated at some point.  But nooooooo.  At some point you have to say a scar on the penis is just a scar on the penis.

Now if I were of a suspicious nature, I might think at least one of these researchers (you know one of those that shows their drug or treatment helping) may have considered some of the cases were not Peyronies Disease, but did not follow up because it would have made the product look ineffective.  I have never said this, though.  I know nobody would do something like that.  Seriously, I think at lease one study this year has pointed to a separate condition labeled as Peyronies Disease - ISS (isolated septal scarring).  The research community will get there.

Larry,

Thank you for your kind words.  I have just felt fortunate to find a group of men like this to share my thoughts and get honest feedback.  Some folks suffer alone.  This forum gives us all an outlet.  I feel like I'm "doing something" even if it's just trying to figure out what this thing is or isn't.  I know we all have similar feelings.  It just seemed to hit me upside the head tonight :::thwack:::: There it went again. :)
Title: Over and out
Post by: Hawk on August 06, 2007, 11:12:16 PM
I am amazed that you could think a diabetic gage needle pinprick on the penis could cause detectable fibrosis that would last for months as part of the normal healing process and that it could not be Peyronies Disease because it eventually improved.  Clearly the "normal" process is the 70% - 99.5% that have NO plaque but only minute normal scaring and tissue healing. 

I accept however that is what you think, feel, conclude or believe based on the presented information. Understanding your position, I am over and out on this topic.

Cheers


Hawk drifts slowly into the mist shaking his head.
Title: Re: My Final Statement
Post by: Liam on August 07, 2007, 11:15:31 AM
...unless someone else posts  ;D

I realize some don't enjoy this discussion (many do).  Thats why there are other topics.  Something for everyone. as it were.  :)  There are plenty of things to discuss in this wacky world of Peyronies Disease and plenty of topics (thanks Hawk) in which to do it.

This is a discussion in an open forum.  That means anyone can state their opinion.  anyone...anyone ::::in my best Ben Stein::::
I would welcome someone new posting even if it is to disagree.

------------------------------------------------------------------------------------------------------------

Boiled down to the simplest form:

* Not every ding, bump, knot, nodule, fibrosis, scar or irregularity in the penis is Peyronies Disease.

* Some may mimic the symptoms of Peyronies Disease.

* Some of these get classified as Peyronies Disease, much like allergic rhinitis was often classified as a cold.

* When they get better.....well you know the rest.  (if the first three are true, this would, at least, reduce the percentage of spontaneous remissions significantly)

--------------------------------------------------------------------------------------------------------

I know this is hard to imagine  ::) .  It is SO far fetched.  Some may even think I am closing my eyes to the fact that my above assumptions are wrong?  Are they?  From what I'm reading many may think 1-3 are wrong. ???  Common sense says they must be right.  The only question would be in frequency.

My hope (and I believe some researchers are figuring this out) is someone will test these ideas scientifically.

Who here could say doing so would be a waste of time? :::shaking head in unison with and walking with my friend Hawk:::  ;)

BTW, is it possible for 5 - 30% of the self injections to do damage that the others didn't?  I don't know.  I'm asking.
Title: Re: My Final Statement
Post by: George999 on August 07, 2007, 11:23:41 AM
* When they get better.....well you know the rest.

Well, hopefully we WILL ALL GET BETTER.  Then we will all know that none of us really ever had Peyronies after all.   ;D
Title: Re: Please let me be wrong!
Post by: Liam on August 07, 2007, 11:27:24 AM
Or I was dead wrong.  If that happens, I will be happy to admit I'm wrong.
Title: Re: Over and out
Post by: Old Man on August 07, 2007, 01:05:48 PM
Guys:

Are you really sure that you mean over and out for good?

Old Man
Title: Re: Old Man
Post by: Liam on August 07, 2007, 01:42:18 PM
No - not really ;D

I feel as strongly about this topic as you feel about VEDs.  Imagine someone trying to silence your discussions about VEDs.  You remember when people scoffed at the idea calling them sex toys.  Now they are widely accepted.  I am glad you didn't give up just because some disagreed with you or became bored with the topic.  We wouldn't have the benefit of you expertise here today if you had.  Don't expect less of me.

If you look back a long time ago, I said I would not post unless someone else reinitiated (or something like that) the discussion.  I was true to my word and will not post on the subject again unless someone else comments.

I hope I have not been offensive to anyone. 

Liam

Title: Re: Liam
Post by: Old Man on August 07, 2007, 02:24:33 PM

Touche'

Old Man
Title: Re: Induration
Post by: George999 on August 21, 2007, 05:25:33 PM
For the record, Tim made an interesting comment in response to one of my posts in the thread "A New Theory on Cause and Treatment of Peyronie's Disease".  This comment introduced the concept of "Induration" as opposed to "Plaque".  I think this might perhaps bridge much of the ground between Liam and many of the rest of us on the subject of "Plaque".  Here is Tim's comment:

So, I think that Induration that comes and goes is certainly not calcific, and probably not "fibrous" meaning characterized by (lots of) fibrotic dense collagenous tissue, but is more likely abnormal tissue (still probably fibrotic) that has some vasculariztion that allows swelling and shrinking of soft tissue. It seems by your history that it is almost certainly inflammatory.

This makes me wonder if "Induration" is not, in some ways, the "leading edge" of Plaque, and that when we believe we are feeling Plaque, we are actually feeling the "Induration" or swelling of surrounding tissue that accompanies the actual plaque.  Thus, if that swelling or Induration is resolved, we might not be able to palpitate the Plaque that remains, so even though the lump has gone away, the deformity could still be there, caused by the now 'invisible' Plaque.  I suspect it is important to differentiate between Induration and Plaque if we are to properly define and understand Peyronies and gain insights into the process behind it.  - George
Title: Re: George - Induration
Post by: Hawk on August 21, 2007, 07:02:18 PM
While I tend to agree in concept, I am not sure I agree in definition.  I don't know that the terms really apply as you (or Tim) used them.  Certainly what is left after the inflammation that you call plaque, fits the definition of induration.  In other words, I think plaque and induration are interchangeable terms. I also think the two stages of plaque formation (inflammation and mature shrinking plaque) do not have two specific and different names.  I think it would be convenient if they did have different names.  I think they should, and it would help our general discussions here.  The problem is that if we coin a term or a usage that is not generally used by professionals, it will only serve to confuse the issue in the long run. 

I think it is probably more accurate to refer to the differentiation that you describe as "mature" and "immature" or maybe "inflamed" plaque.

As accepted definition goes, I think induration is to plaque as horseless carriage is to automobile.  An old term that is seldom used for Peyronies Disease but actually means plaque.

Hawk
Title: Re: thhhhhhhh
Post by: Liam on August 21, 2007, 08:51:28 PM
:::::biting my tongue:::::: :P

 :)
Title: Re: Sorry - Couldn't Do It - The Door was Opened
Post by: Liam on August 22, 2007, 06:16:03 AM
I think it is safe to say most men with Peyronies Disease start with nodules.  Some notice; Some don't. 

I also think it is rare for someone to get Peyronies Disease in his 20s, although it has been diagnosed.

I think we get in trouble by trying to define the rule by the exceptions.

Clearly every bent penis is not caused by Peyronies Disease.

Is every case of penile fibrosis Peyronies Disease?  ??? (for example post castration fibrosis or development of fibrotic tissue after penile fracture)

BTW, I agree with Hawk's horseless carriage analogy.  :)

For the record, I will say again, I think a man with a curved penis should be welcomed here regardless of the cause of the curve.  It is equally traumatic and gut wrenching whether it is Peyronies Disease, congenital, or a fracture.  We focus on Peyronies Disease.  But, it is also appropriate discuss other conditions closely related to Peyronies Disease.

Title: Re: Induration, Plaque, etc.
Post by: George999 on August 22, 2007, 11:37:07 AM
Hawk,

If Induration is indeed immature Plaque, and if attacking Metabolic Syndrome can substantially eliminate Induration (which is certainly my current ongoing observation), then that is potentially a very useful strategy that could possibly knock out Peyronies completely in cases where the Plaque has not had a chance to mature.  Additionally, it would be a strategy with the potential to halt the progress of the disease in its tracks.  New research is showing that one doesn't have to have hypertension or diabetes to have Metabolic Syndrome.  In fact, one doesn't even have to be over weight by conventional standards.  So I do think we really have to think these terms over, since how we define Peyronies is going to play a role in determining how we measure the successes or failures of various attempts to kill it.  That is why I cross posted this whole issue over to this thread.

  - George

PS - I figure that if we can ever find anything that Hawk and Liam can agree on, we are probably getting close to the truth.  ;D
Title: Re: Induration, Plaque, etc.
Post by: Hawk on August 22, 2007, 12:10:04 PM
If Induration is indeed immature Plaque,

George,

I think immature plaque is immature induration

I think plaque is induration

Two words that mean the same thing and according to Dr. Levine Peyronies Disease plaque (induration) is nothing but scar tissue that over healed and overran healthy tissue.

I have no argument with your contention that the leading edge of plaque is immature inflamed plaque and that it may be able to be much more noticeably turned off than mature plaque.  I just think the term induration fits this no better than it fits mature plaque and it is a misuse of the word.


I liked your Hawk and Liam agreement comment.  ;D  When I saw he agreed I went back to re-read to see what I had written to see if I made some typo. ;D
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on August 22, 2007, 12:54:37 PM
I never liked the term induration because it did not seem to fit with my experience. However, it seems that it does fit with some men's experience, such as George.

This may not be textbook, but induration normally means, simply, swelling and firmness. Plaque means (to me - for it is VAGUELY defined in medicine and urology - and it means different things in different disorders such as heart disease and Peyronie's) means a more permanent and scarred sort of tissue, that is unyielding and firm.

Think of the induration of a hive, versus that of elephantiasis. In one case, fluids flood into the tissue, mediated by histamine, and swelling (induration) ensues. In filariasis (elephantiasis), the lymphatic channels are blocked, and the tissue swells, and eventually turns leathery and tough (and remains swollen). In the latter case, induration no longer works as a descriptor to me.

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on August 22, 2007, 01:09:52 PM
Websters Medical Dictionary Definition of Induration: Localized hardening of soft tissue of the body. The area becomes firm, but not as hard as bone.

Dr. Levine's definition of Peyronies Disease Plaque: "A misnomer...basically scar tissue...can be used interchangeably with scar tissue.

If these are not identical, it would sound if anything the induration is more firm or mature.  I keep reemphasizing, I agree that it is established there is mature and immature scar tissue, I just can find no evidence that in the case of Peyronies Disease, that induration is anything but another word for plaque.

It seems we are arguing (in the classical sense) over which is the best fuel source, gasoline or petro.

We may want to call the vapors coming off of gasoline petro because we have no good word for this state of gasoline but in fact petro is not a form of gasoline, it is another word for gasoline.

In the case of Peyronies Disease, induration is an antiquated (and somewhat regional-European) word for plaque and that is why it is not in the vocabulary of specialists with an interest in Peyronies Disease.
Title: Re: What Have I Done?
Post by: Liam on August 22, 2007, 05:48:11 PM
Quote
I figure that if we can ever find anything that Hawk and Liam can agree on, we are probably getting close to the truth.

Quote
I liked your Hawk and Liam agreement comment.    When I saw he agreed I went back to re-read to see what I had written to see if I made some typo.


Wait... I wasn't wearing my glasses.  I thought you said "baseless miscarriage"   ;)

 ;D :D ;D :D ;D :D
Title: Re: Secondary Peyronie's
Post by: Liam on August 26, 2007, 09:03:41 PM
Dr. Gelbard gave this response to a question posed:

Quote
I think you probably have congenital curvature. In some cases the curvature can put enough stress on the tissue to induce secondary Peyronies. If this causes scarring opposite the bend, it may actually straighten the penis - but with shortening. Sort of a natural nesbit effect. MG

The scarring is due to chronic mechanical stress.  He has obviously seen this happen.  It is interesting he says "secondary" Peyronie's.  This also indicates the label "Peyronies Disease" is used for penile plaque and not so much for the condition.  It differentiates it from "regular" Peyronies Disease.

The whole concept of this secondary scarring related to CC is interesting and I wonder if there is any other mention of it in the literature.  Regardless of the definition issue, this is useful knowledge.  It seems to make sense.

Title: Re: Secondary Peyronie's
Post by: Hawk on August 26, 2007, 10:18:55 PM
It is interesting he says "secondary" Peyronie's.  ...It differentiates it from "regular" Peyronies Disease.

No it doesn't.  I think you are clearly reading between the lines.

It only differentiates it in the sense that a Peyronies Disease curve was caused by a non-Peyronies Disease curve.  He said nothing that suggests it is a different Peyronies Disease than that caused by a brick falling on the penis, or Peyronies Disease from micro-trauma.  They are all Peyronies Disease triggered by trauma.  In fact he said nothing to suggest they are in anyway different than Peyronies Disease from no trauma.

A secondary disease is simply a disease caused by a preceding disease.  Nothing in that implies natural  progression of the disease varies in any way. 

I have more but I don't want to dish out more than can be consumed in one gulp.


Title: Re: Peyronies Disease = Fibrosis of the Penis
Post by: Liam on August 27, 2007, 08:59:27 AM
My post was not me being contrary.  I am trying to clarify.  I may be seeing things in a different light.

Quote
A secondary disease is simply a disease caused by a preceding disease.


Peyronies Disease is the fibrosis.  The cause of the fibrosis is immaterial.

It would be like saying death is caused by anoxia.  What caused th anoxia is a different question.

A broken toe is a broken toe.  What caused it is a different question.

COPD may be caused by many different things.  It is still COPD (I think I like this analogy best).

This would mean Peyronies Disease could be caused by: micro trauma, macro trauma, circulation problems, hormone deficiency,
 bad Karma  ;) etc.  It is still Peyronies Disease.

If I may take this a step further, treatment plans must be individualized to some extent.  A person who has Peyronies Disease because of castration would receive different treatment (and most probably a different prognosis) than a man with an unclear etiology (what works for one won't work for all).  But, they are both being treated for Peyronies Disease.

Some cases may be related to Dupuytrens and Lederhose Disease and others not.

So, back to the original post.  Dr. Gelbard's choice of the term "secondary" was an implication of CC being the cause.

Quote
Nothing in that implies natural  progression of the disease varies in any way.

Except if the cause (like mechanical stress) is identified and removed (neutralized) will the fibrosis stop advancing or possibly dissappear?  I bet it does.  :)

Using this model for Peyronies Disease, it would make perfect sense for some Peyronies Disease to spontaneously resolve.  It may be totally dependent on the cause.

Is this what some of you guys have meant all along?


Title: Re: Liam- Peyronies Disease = Fibrosis of the Penis
Post by: Hawk on August 27, 2007, 09:17:15 AM
Liam,

I never thought you were being contrary.

... if the cause (like mechanical stress) is identified and removed (neutralized) will the fibrosis stop advancing or possibly dissappear?  I bet it does.  :)

I bet it typically does NOT.

I think my Peyronies Disease was caused by repeated injection that has long since stopped.  Many have Peyronies Disease triggered by a sexual injury or even a sports injury that has not resolved.  The increased incidence of Peyronies Disease from radical prostatectomy patients is most likely the result of injured internal tissue.

I ALMOST whole heartedly agree with your definition that Peyronies Disease is penile fibrosis regardless.  This is the missing component: Peyronies Disease is penile fibrosis triggered by any cause, that over-runs the bounds of any injury and replaces healthy undamaged tissue.   Peyronies Disease is the presence of this condition of this fibrosis.  Otherwise, there is no Peyronies Disease because no scientist knows the exact cause or causes of the tendency of the body to spread normally helpful fibrosis across healthy tissue. The knowledge simply does not exist to define Peyronies Disease by any possible underlying differences in cellular processes (poor wording).  It is defined by the over-running fibrosis.  The fibrosis may be diffuse or palpable.  It may then resolve, stabilize, or progress for life.  It may even affect the tunica or the penile chambers themselves.

I think you have been trying to define Peyronies Disease by the cause and not by the condition of a penile fibrosis that overuns healthy tissue, regardless of the cause.

PS: Sorry to be redundant but I keep thinking if I say the same thing in a slightly different way we will strike on communication.
Title: Re: The Big Peyronies Disease Umbrella
Post by: Liam on August 27, 2007, 01:32:04 PM
Quote
Sorry to be redundant but I keep thinking if I say the same thing in a slightly different way we will strike on communication.

 ;) I think we've both been guilty of that.  But, I feel we have reached an agreement on the core issue with maybe disagreement only on the periphery.  For example:

Quote
... if the cause (like mechanical stress) is identified and removed (neutralized) will the fibrosis stop advancing or possibly dissappear?  I bet it does. 


I bet it typically does NOT.

I noticed you said typically indicating you think there may be a possibility under some conditions.  I also hold out that some may not.  Figuring out which do and which don't (recover) may help unravel the mystery of Peyronies Disease.

The other thing of which I am not completely convinced is that doctors (and patients filling out surveys) all have the same understanding of the disease.  I tend to agree with the "Plaque Gone Wild" model.  I'm not sure every diagnosis of Peyronies Disease is confirmed, though.  If there was an injury causing fibrosis, how do they know it is fibrosis "that over-runs the bounds of any injury and replaces healthy undamaged tissue."  They only know what they see that day.  When I was diagnosed, I had two little tiny itsy bitsy nodules.  I had no curve and no pain.  Things changed  :(  The diagnosis was correct.  Suppose they never changed.  Is it still Peyronies Disease or just a normal response to an unknown trauma.  Is there such a thing as a normal response to trauma or is that Peyronies Disease, too?

I am suspicious that penile fibrosis equal Peyronies Disease in the lexicon of many professionals.

It seems to me, the term Peyronies Disease includes so much, I am starting to see it in a different light.

In the COPD Peyronies Disease group of medical conditions... diverse disorders with similar consequences in the body.
 Modified from a quote from this link: http://en.wikipedia.org/wiki/COPD

Maybe this overstates it, but it is closer than my understanding of the definition yesterday ;)  .
Title: Re: The Big Peyronies Disease Umbrella
Post by: Hawk on August 27, 2007, 02:49:34 PM
About your suggestion that Peyronies Disease resulting from trauma gets better if the trauma is removed and my suggestion that it does not, you said:

Quote
Hawk, I noticed you said typically indicating you think there may be a possibility under some conditions.  I also hold out that some may not.  Figuring out which do and which don't (recover) may help unravel the mystery of Peyronies Disease.

I said typically because I don't think any Peyronies Disease typically gets better.  I do think a small percentage of all forms of Peyronies Disease have the capacity to resolve.  I agree that figuring out which do and do not would be a huge clue but I think we have not yet begun to unravel that mystery.

You also said:
Quote
The other thing of which I am not completely convinced is that doctors (and patients filling out surveys) all have the same understanding of the disease.  I tend to agree with the "Plaque Gone Wild" model.  I'm not sure every diagnosis of Peyronies Disease is confirmed, though.  If there was an injury causing fibrosis, how do they know it is fibrosis "that over-runs the bounds of any injury and replaces healthy undamaged tissue."  They only know what they see that day.  When I was diagnosed, I had two little tiny itsy bitsy nodules.  I had no curve and no pain.  Things changed  :(  The diagnosis was correct.  Suppose they never changed.  Is it still Peyronies Disease or just a normal response to an unknown trauma.  Is there such a thing as a normal response to trauma or is that Peyronies Disease, too?

I am suspicious that penile fibrosis equal Peyronies Disease in the lexicon of many professionals.

It is pretty easy to agree that if urologists are as ignorant of Peyronies Disease as the Levine survey seem to indicate that many urologists also use flawed definitions and diagnoses.

Your Peyronies Disease did not have to change (progress) to be Peyronies Disease.  If you had no perceived trauma in the area of the plaque then normal healing would have made no PERCEIVED plaque, fibrosis, or scar tissue.  The presence of fibrosis was felt on healthy undamaged tissue.  It was Peyronies Disease with or without further progression.  Peyronies Disease is not defined by the persistence in overunning healthy tissue but by the fact that it does.  As you know, there are degrees of severity with Peyronies Disease.

There is no such thing as normal response to trauma that is Peyronies Disease since Peyronies Disease is fibrosis that overruns the bounds of an injury and continues on to healthy tissue.  If you have a fine, surgical cut, halfway through your penis and develop a fine scar there it is not Peyronies Disease.  If you run your penis through a meat grinder and have a gnarly, twisted, scared, diminished, penis, that probably is not Peyronies Disease.  In neither case did the healing process go awry.

Finally you said:
Quote
It seems to me, the term Peyronies Disease includes so much, I am starting to see it in a different light.

In the COPD Peyronies Disease group of medical conditions... diverse disorders with similar consequences in the body.
 Modified from a quote from this link: http://en.wikipedia.org/wiki/COPD

Maybe this overstates it, but it is closer than my understanding of the definition yesterday ;)  .

I am glad you liked that Wikipedia definition.  I wrote it!    ;D      Just Kidding!  ;D   ;)
Title: Re: Making Progress
Post by: Liam on August 27, 2007, 03:18:49 PM
Quote
There is no such thing as normal response to trauma that is Peyronies Disease since Peyronies Disease is fibrosis that overruns the bounds of an injury and continues on to healthy tissue.  If you have a fine surgical cut half way through your penis and develop a fine scar there it is not Peyronies Disease.  If you run your penis through a meat grinder and have a gnarly, twisted, scared, diminished, penis, that probably is not Peyronies Disease.  In neither case did the healing process go awry.


We are getting closer to a meeting of the minds.  :)  What about inter-septal scarring (ISS- Atypical Peyronies Disease) - http://www.ingentaconnect.com/content/bsc/jsm/2007/00000004/00000001/art00027

Quote
It is pretty easy to agree that if urologists are as ignorant of Peyronies Disease as the Levine survey seem to indicate that many urologists also use flawed definitions and diagnoses.

Next you'll be agreeing some of the n% of spontaneous remissions were potentially flawed diagnoses.

BTW, I agree 100% with your assessment of my initial dignosis.  I don't think the prostate surgery helped the Peyronies Disease any.

Title: Re: Liam - Atypical Peyronies Disease
Post by: Hawk on August 27, 2007, 03:36:54 PM
You asked about
Quote

We are getting closer to a meeting of the minds.  Smiley  What about inter-septal scarring (ISS- Atypical Peyronies Disease) - http://www.ingentaconnect.com/content/bsc/jsm/2007/00000004/00000001/art00027

I apply the definition:
Question - Is it scarring (plaque or fibrosis) on penile structures?
Answer - Yes

Question - Is it scarring on healthy tissue as opposed to damaged tissue
Answer - I guess some might be and some might not be.  If the answer is yes then it meets the definition of Peyronies Disease

Comment:  Remember though that this is not the place we most typically see Peyronies Disease develop so I guess it would not be typical Peyronies Disease.  It would be "atypical Peyronies Disease" but Peyronies Disease none the less just as an atypical fracture is still a fracture.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Liam on August 27, 2007, 03:44:35 PM
Quote
Comment:  Remember though that this is not the place we most typically see Peyronies Disease develop so I guess it would not be typical Peyronies Disease.  It would be "atypical Peyronies Disease" but Peyronies Disease none the less.


Maybe it is "Atypical Dupuytren's" ;D
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on August 27, 2007, 03:52:57 PM

 ::) :o ;D
Title: Slow Healing Wound
Post by: Liam on October 02, 2007, 06:03:39 AM
Regarding spontaneous resolution:
Quote
...its more likely a slow healing wound than Peyronie's Disease
Dr. Laurence Levine

Thanks for pointing that out to me Hawk.  I appreciate your intellectual honesty.


I may only have one person who agrees with me, but, DAMN, he's a good one!!!
Title: Re: Liam
Post by: Hawk on October 02, 2007, 07:40:16 AM
I think he said "most likely"

I think we all agree that all spontaneous resolution was not Peyronies Disease.

I think Levine admits some spontaneous resolution may well be Peyronies Disease.

I not sure that we moved from where we were.


I also will NEVER believe, and I do not think Dr. Levine believes or would suggest that a significant curve, in the absence of any reported injury, or event, cold be caused by a "wound".

Micro wounds can cause Peyronies Disease which is the development of an abnormal amount of scar for the size of the trauma.  Normal would healing causes scar tissue in proportion to the wound.  Normal slow wound healing of a "micro trauma" only produces "micro scaring"
Title: Re: Exact Quote
Post by: Liam on October 03, 2007, 06:48:02 AM
Regarding spontaneous resolution

"I would venture to guess that if a man has a ... resolution of their Peyronies Disease its more likely a slow healing wound than true Peyronie's Disease."  
Dr. Laurence Levine

http://webcasts.prous.com/AUA2007/webcaster/template/player.asp?id=277&q=128&v=wm&tgs=&webcast=course01&CLID=2&CID=YY




Quote
     Re: M1 -50% Myth
« Reply #498 on: May 17, 2007, 05:03:45 PM » Quote Modify Remove Split Topic 

--------------------------------------------------------------------------------
I hate to disagree with your doctor (especially with his optimistic spontaneous recovery rate).  I hope we can improve our curve or reduce our pain.  We should continue to use techniques that are scientifically sound.  But, it will not go away completely with the current treatments (or without). 

My personal opinion (based on my involvement for about 2 years) is there is a 0% spontaneous recovery rate.  Those that are said to recover (spontaneously) had a condition mislabeled as Peyronies Disease.  Even if we are both wrong, I bet I'm closer by far.  Some claim to have straightened their curve through different means.  The condition is still there, though.

There are those who may disagree with me.  Just call me Thomas (of doubting fame).

Sorry to be a downer.  It is important to look at this condition honestly.  I have not given up hope.  I just don't want to be given false hope.

Liam 


Hawk said:
Quote
I also will NEVER believe, and I do not think Dr. Levine believes or would suggest that a significant curve, in the absence of any reported injury, or event, could be caused by a "wound".

This discussion is a bit of a red herring.  The quote says what it says and does not address this issue.

Interesting to me is the use of "true" Peyronies Disease.  I've heard that concept somewhere before on this forum ;)

Title: Re: Liam
Post by: Hawk on October 03, 2007, 09:26:02 AM
Liam,

You are a master of tactic and "strategery"

One more quote that is not clearly identified as to the speaker or where you found it.  One can only assume it was made by the noted Linus Pauling during his Nobel Award acceptence speech, or perhaps by Paul Nobel while doing a line of coke.


Quote
In my many years of practice I have treated many conditions, the majority of which were not true Peyronies Disease.  These have been meticulously documented and range from hemorrhoids to fractures of the metatarsals.
 

Now, argue with that!

 ;)
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on October 03, 2007, 11:26:32 AM
The definition is obviously of only limited utility.

The fact is that some men get better without any treatment, and this confounds our interpretation of "cures" done without control subjects.

To post hoc define those who healed as "not really Peyronie's" is fair enough to argue, but begs the question of helping those who have a problem figure out what to do.

If I had a curve, I would seek help. I did (years ago), and time has shown me that I did not get better spontaneously (or with medications either).

Tim
Title: Re: Hawk - Quotes
Post by: Liam on October 03, 2007, 12:30:41 PM
I'm not sure which quote you mean.  :)  ???

1st Dr.Laurence Levine - link to source provided

2nd Me - Post number - name signed at end

3rd - you - preceded with "Hawk said"

I agree with you Tim about helping those who need it.  We need to look at all issues with fresh and critical eyes. 

If we keep doing what we've always done, we will keep getting the results we have always gotten. - Me 

You can quote me on that ;)  :D  ;D
Title: Why do we need labels? Can't we all just get along?
Post by: Liam on October 08, 2007, 07:07:04 AM
After reading some recent posts, I don't think my views are fully understood.  Having a bent penis is BAD regardless of the cause.  The label Peyronies Disease is just that, a label.  There are different processes and manifestations of the condition(s) now labeled as Peyronies Disease.  It would be more beneficial to the understanding and subsequent treatment of Peyronies Disease to correctly and more precisely label which condition is presenting.

Some seem to think I am implying some kind of inferiority to anyone who does not have classic symptoms of Peyronies Disease.  That notion is as ridiculous as saying losing a limb in a car accident is not as bad as losing a limb in an industrial accident.  A curve is a curve.  I hope this clarifies my view.  I can't believe I even need to say this, but obviously I do.

I don't give a rodent's rear what you call them.  Just understand the differences.
Title: Further definitions
Post by: Tim468 on October 09, 2007, 10:18:40 AM
Below is a recent abstracted update (I get them automatically as they are released in the literature - it helps me keep up). The authors looked at active versus more or less resolved inflammation in the plaques and the borders of the plaques of patients they operated on. Not surprisingly, there is a variable degree of ongoing inflammation in patients. And not surprisingly, those with active and ongoing processes do more poorly in terms of healing and erectile function.

This argues for a better way of staging and assessing inflammation before operating, but it also helps us see why a surgeon might want to wait a year to be sure that yo are not progressing before operating.

Tim

ps - I note that all patients despite their histology were labeled as having "Peyronie's Disease"!

koff koff

**********************

Full Text Link Available
UI 17647169
AU Schick V.  Bernhards J.  Rahle R.
FA Schick, V.  Bernhards, J.  Rahle, R.
IN Urologische Abteilung am Robert-Koch-Krankenhaus der Klinikum
  Region Hannover GmbH, Germany. schick@rkk-gehrden.de
TI [Clinical symptomatology and histopathological changes in
  Peyronie's disease: a comparative analysis]. [German]
SO Aktuelle Urologie.  38(4):313-9, 2007 Jul.
AB PURPOSE: Our understanding of the etiology of Peyronie's disease
  (IPP) as well as the diagnostic and therapeutic approach is
  suboptimal. In order to improve this situation, we conducted a
  comparative retrospective analysis between the clinical symptoms of
  50 patients with IPP and their histopathological results after
  radical plaque excision. PATIENTS AND METHODS: From 106 patients
  with IPP who consulted our clinic between 2002 and 2004, fifty were
  selected after clinical examination (sonography, Doppler sonography,
  DICC cavernosometry, X-ray) for surgery. The median age was 57.2
  years. The plaque material was examined qualitatively and
  semi-quantitatively. Perivascular infiltrations and the type of the
  cells have been investigated immunhistochemically, and the structure
  of collagen was analysed by polarisation microscopy. RESULTS: In all
  50 plaques, the tunica albuginea was fibrotic. In 41 cases the
  corpora cavernosa were infiltrated too. In 22 patients, the
  cavernosogram revealed venous leakage from the penile shaft. 32
  plaques showed inflammatory infiltrations, 21 pathological vessels
  and 16 osseous metaplasia. In 13 plaques the fibrosis was stable and
  areactive. Mostly patients with metaplastic plaques or atypical
  vessels suffered from pain and erectile dysfunction. The results 6
  months after plaque resection were best in painless patients who had
  that were plaques well marked off from the surrounding tissue (n =
  13). Patients with aggressive fibroses of the corpora cavernosa (n =
  5) and venous leakages from the penile shaft (n = 10) showed the
  worst results. CONCLUSION: A preoperative biopsy of IPP plaques
  could improve the quality of therapeutic decision. Painless patients
  with well marked and detectable plaques are suitable candidates for
  surgery. An operation is not the first-line option for patients with
  aggressive fibroses, venous leakages and painful indurations with
  fuzzy demarkation.
PT Comparative Study.  English Abstract.  Journal Article.
Title: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on March 15, 2008, 08:46:25 AM
Here are some technical papers with some very interesting information on the underlying pathology of Peyronies Disease.  I found tons by doing a Google search on: Peyronies cells immortal.  I also did one on Peyronies apoptosis.  These are the sort of thing I have to read more than once before I reach my potential grasp of the material and at this point I have only scanned them.  I post them because even on a scan they seemed to have great information.  Those with more time than I can invest right now, may find them very informative.

To George: In reference to a discussion on the "Alternative Treatment" topic, there is an excerpt in the 3rd reference that addresses Peyronies Disease cell immortality resulting from the p53 protein function found in some cancers.  I think one of the other papers found an absence of another investigated agent of cell immortal...


L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures.
http://www.ncbi.nlm.nih.gov/pubmed/14996430


Implications of nitric oxide synthase isoforms in the pathophysiology of Peyronie's disease  T J Bivalacqua1, H C Champion2 and W J G Hellstrom1  http://www.nature.com/ijir/journal/v14/n5/full/3900872a.html


The following is a 40 page book preview of Levine's $150 book on Clinical Management.  It is a sizable chunk of the book
Peyronie's Disease: A Guide to Clinical Management
  By Laurence A. Levine
 http://books.google.com/books?id=fLlNmRPzaEEC&pg=PA31&lpg=PA31&dq=inducing+apoptosis+peyronies&source=web&ots=bFBfv5d1_t&sig=_GvWEXw6jBw4ciRQbXKV9FtcBJE&hl=en#PPP1,M1


Perturbation of cell cycle regulators in Peyronie's diseaseAuteur(s) / Author(s)
MULHALL J. P. (1) ; BRANCH J. (1) ; LUBRANO T. (1) ; SHANKEY T. V. (1) ;


The p53 protein has been shown to be an important cell cycle regulator and pro-apoptotic factor. Aberrant p53 function leading to cell immortalization and proliferation has been implicated in several human malignancies. We hypothesized that abnormal p53 function may explain the high proliferative ability of fibroblasts derived from Peyronie's plaques. This study was undertaken to study the presence and function of p53 and its downstream elements (p21, mdm-2) in Peyronie's disease cell cultures. ...This is highly suggestive of an aberration of the p53 pathway in plaque-derived fibroblasts. Peyronie's plaque-derived fibroblasts demonstrated stabilization and defunctionalization of p53 protein combined with appropriate responses of its transcriptional elements. These findings may explain the high cell proliferation rates in these cells and suggests a role for perturbation of the p53 pathway in the pathogenesis of Peyronie's disease   
http://cat.inist.fr/?aModele=afficheN&cpsidt=13413109



I think Tim posted an abstract of this one but I think this is the full paper with photos and diagrams in a good easy-to-read font size PDF link.
Peyronie’s Disease: Advances in Basic
Science and Pathophysiology
Trinity J. Bivalacqua, BS, Sunil K. Purohit, MD,
and Wayne J. G. Hellstrom, MD, FACS 
http://www.hawaii.edu/hivandaids/Peyronies%20Disease%20%20%20Advances%20in%20Basic%20Science%20and%20Pathophysiology.pdf

Enjoy, Hawk
Title: Re: p53
Post by: George999 on March 15, 2008, 12:32:29 PM
Hawk,  Thanks again for all of this excellent data.  As I noted in the Alternative Treatments thread, the question that now presents itself is simply "Why increased levels of TGF-beta-1, which should be causing apoptosis via p53 are not working?".  Researchers reference speculation about a "defective" p53 protein.  But the problem that I am seeing with this equation is in just how much TGF-beta-1 the p53 protein can withstand.  We know very well that excessive insulin over an extended period of time can cause cells to become insulin resistant.  This "excessive over regulation" and "resistance" response is actually replicated over and over in human metabolic processes.  That really makes me suspect that the solution is to knock down the TGF-beta-1 levels to a point that they can effectively modulate p53.  And we actually see that effect with treatments known to be effective.  - George
Title: Diagnosing & Treating Peyronies vis-a-vis other anomalies
Post by: Olaf on May 11, 2008, 06:33:15 PM
This is a first post by a new member...

I met Tim in another forum, and he suggested I get my butt over here with my questions.
I've read the "Highlights of Defining Peyronies Disease," but I'm still wondering about my own situation--and I can't find a thread on "Diagnosing Peyronies," especially in contrast to other conditions.

So here's my situation:
Basically, I'm not sure how to discern the difference between a congenital "bend" or "kink" and Peyronies. I'm sure I had erections before puberty, but I certainly don't remember much about them, let alone how straight they were. And the "bend" I have has been there for some time. I have no recollection of severe penile trauma. While I realize that Peyronies Disease is not caused by a particular style of underwear (or method of masturbation, etc.), I do recall waking up a few times as a teenager with my erect penis being painfully bent because I was wearing briefs too tight to allow sufficient room for a full erection. The pain would last a day or two.

As a teenager, my erections always bent a bit toward the left, at the very base of the penis, just beneath the pubic bone. But now that I'm 52 and dealing with occasional ED, the "bend" has become more like a loose hinge.. It readily flops to the left unless my erection is at 100%. Even when it's at 100%, a definite "kink" in the tunica is now visible under the skin. When at 100%, there's no way I can push it over to my right thigh, but I can still push it over to my left thigh. Maybe the kink was there before, and I just didn't notice it. But if I'm having difficulty getting it up, or in maintaining an erection, that's the last spot to get stiff, and it's the first place to deflate.

I've seen our family doctor and a urologist. The urologist ordered a penile blood flow test (mini blood-pressure cuff on the flaccid penis). The test result was that I had blood flowing to my penis (wow.) He also palpated my penis while flaccid--I assume looking for plaque--and said I didn't have Peyronies Disease. But I read a thread here that said it's difficult to diagnose Peyronies Disease when it's at the base of the shaft.

The "bend" itself doesn't bother me, but since the "kink" seems to be linked to ED, I did some digging on the internet a couple years ago. I wound up at a penis englargement site that recommended "jelqing" and VED for improving erectile quality and straightening any curves. My urologist agreed that a VED could help reverse ED; he regularly prescribes it to prostatectomy patients to "keep things primed." To also help strengthen and straighten the "kinked" area, I've tried getting the VED as close into the base of the shaft as possible. However, my vas got sucked up into the tube and engendered some epididymitis (aargh!).

The doctors I've seen basically say that if Viagra or Cialis can give me a workable erection (which they do), then don't bother worrying about the kink. But if I can get away from medication and its side effects by straightening things out naturally, that would be my preference.

Bottom line: How does one discern/diagnose Peyronies Disease as opposed to congential anomalies? Does it make any difference in treatment?
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on May 12, 2008, 12:04:31 AM
Welcome Olaf!

One thought - it may be that using a narrow diameter VED tube would help prevent the development of the "sucking up" of other parts (been there, done that, didn't like it). A tube of a diameter just smaller than the diameter of the fully erect penis would prevent (once you are filled with blood) the uptake of scrotum or it's contents. This would also allow for a firm to the pubic bone placement of the tube (at least that is my experience with it). Also, this fits in with a routinely used protocol many of us have used.

An alternative is a sleeve that fills the gap between the inner diameter of the tube and your erect (but not as wide) penis. I have attached a figure showing what I mean.

It sounds to me like either a very old injury in your teen years versus a congenital "lesion" (i.e. I am not sure it was pathology) that is now changing. Perhaps it is worse from what you way. OTOH, it may simply be due to less firm erections.

I'd pursue that as you are doing, including looking for risk factors for diabetes or heart disease. Many a good urologist will suggest strongly that any ED should prompt a hard look for vascular disease, as that is often a causitive factor in poor(er) blood supply to the penis.

So some thoughts - perhaps a focus on mechanical things like a narrow diameter VED protocol and a close look at nutrition, fiber intake, activity level and other risk factors for mild ED (and diabetes or cardiovascular disease), along with use of a PDE5 inhibitor like Viagra to make sure that your erections are hard when you have intercourse, and that may be enough. Most would suggest a trial of a broad spectrum vitamin E, and consideration of Pentox if there are ANY data showing it is progressive and truly represents Peyronie's Disease.

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on May 12, 2008, 12:22:25 AM
Here is a link to a VED seal

http://www.timmmedical.com/cart/index.php?act=viewProd&productId=3

I have a bigger and softer one.

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: karthik on July 25, 2008, 10:31:41 PM
Hi Guyz,
 Iam karthik from India. I am Diagnosed of peyronie's disease. I am only 25 and feeling totally devastated. My penis has always been turned to the left as far as I know, but for the last 2-3 months, I was noticing some discomfort in the penis, especially when wearing tight underwears. 2 weeks ago i felt some lump in my penis's left shaft and the turn increased  more. I consulted a uro. He said it was peyronie's  disease.
  guys, I am not sure what to do now. After reading many of the posts here, I know I shouldn't panic but somehow my heart sinks everyday in the morning when I get up, I just can't help it.I know that nobody here knows how my case will be or how it will proceed, but It would be great If I get an Idea from you people on what to do next. Here are some questions I couldn't find answers to in the posts.
 
1) Should I stop masturbating? atleast of a few weeks now?
2) Should I tell my parents that Iam not fit for marraige? (here in india, marriages are arranged by parents, and they are already looking for one for me), or should I wait for sometime to see if it improves? Though my doctor said I could get married and he asked me to do it soon, I never want to waste the life of a girl, because of my problem.
3) my erections seem to be normal, though there is slight pain. When I masturbated yesterday, ejaculation
happened, but the force of the sperm seemed to be really low. I mean, It was like the sperms was falling out instead of rushing out like in fountain. Is this because of peyronie's ?

  Is there anything else I can do? My uro has given me vitamin E for 20 days for now.
Your answers can save my life. Thanks!
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: LWillisjr on July 25, 2008, 10:50:41 PM
Karthik,

1. I'm not aware of any immediate connection between Peyronie's Disease and masterbation. As long as it isn't painful, and you aren't mastberbating in a rough way to cause more pain. I don't see how stopping would help or hurt your situation.

2. My bend is 60 degress and my wife and I were still able to have intercourse. I don't know the severity of your situation. But just because you have Peyronie's doesn't automatically make you unfit for marriage.

3. I'm not aware of Peyronie's having any effect on seman amount or force of ejaculation. From my experience my Peyronie's disease had no effect on this.

I'm learning everyone's case is different. You stated you started out with a curve and then it got worse. Maybe you had other complications besides the Peyroine's disease. I don't know. It seems many urological issues tend to get blamed or as a result of Peyronie's disease, and this isn't the case. Don't panic, and spend some time reading posts on this website. You asked are there other things you can do, the answer is an overwhelming.....  YES!! Read the child boards on stretching therapy, use of VED's, oral meds (besides Vitamin E), verapamil injections, etc. Everyone's case is different, there is no easy answer that works for everyone.
Title: Will the pain decrease?
Post by: karthik on July 26, 2008, 09:34:48 PM
Thanks lwillisjr for answering! and everybody else for creating such a wonderful forum!

Guess I would have to wait for some more time to check if it causes any problems.

guyz, By the way, the pain that I have while erection now, will that decrease over time naturally, or would It remain forever?

thanks,
Karthik
 
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on July 29, 2008, 12:41:01 AM
Karthnik

Pain, in general, gets better.

the symptoms you describe with ejaculation sound a bit like something might be impeding outflow.  If you have any lesion compressing against the urethra that could affect ejaculation.  Also, it is possible that anxiety has led to more difficulty emotionally tending to affect how your ejaculation happens (just speculating).

We generally advise young men who are worried about meeting a partner that when they meet a young girl who truly loves them that this will not be an issue.  I've not thought about it in a cultural context of an arranged marriage.  Assuming that love grows slowly over time in an arranged marriage (as opposed to growing slowly over time before the marriage, when the marriage is not pre-arranged),then I can see why that might make you anxious.  Just remember that all young men are very anxious about this issue, as was I, but a happy love life is still waiting for you.  Good luck!

Tim

Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: sams on August 09, 2008, 12:44:01 PM
My question is if everybody has been diagnosed to have peyronie's by urologist, or is there people here who
actually has not been diagnosed by the uro?
I am into my 6th month now, and recently have seen my third urologist who says that i don't have peyronie's. However, i strongly believe the opposite. There is some deviation, without pain when erect. There are also no plagues present when flaccid at site of angulation in ultrasound which is their reason to believe that i do not have peyronies, and i cant find any when erect.  However, i have burning pain on tip of the penis which can get very very difficult to handle at times. I have a small node at other side of peyronies which move with skin, that i dont think is related to peyronies. What can it be?
I have read alot on this forum, and it seems that peyronies may effect people somewhat differently. I have read alot, and still confused about it 
My question from the experienced gentlemen here is how you define peyronies? What are your symptoms?
Do you feel plague when erect/flaccid? Does the plague have to be at site of angulation? Do you experience pain when erect? How is the pain? Hope to get some answers from you guys. These answers could help us alot who are new into this and not able to understand what is going on
Regards
Sam
Title: Sure it's possible to have Peyronies Disease even when MD says you don't
Post by: couldbeworse on August 09, 2008, 10:15:02 PM
I went to 3 or 4 urologists and complained of pain and deformation.  They couldn't find what was causing my problem.  Finally saw a Peyronies expert, who performed doppler scan with drug induced erection (my erection, not his).  The last doctor said it was Peyronies undoubtedly.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: alcohen on August 25, 2008, 05:31:18 PM
Hey Sams, I just saw your post.  I am due to have my doppler scan done soon and I have as of yet still not been told that I have Peyronie's.  I have also been to three urologists.  The first two refused to even entertain the notion that it is Peyronie's, they said definitely not and told me it was all in my head.  The third one, a Peyronie's specialist, said that it sounded like Peyronie's but that he could feel no plaque.  He is doing a doppler ultrasound to see exactly what is going on.  I have a cord bump going from the base of my penis on the top towards near the head that I can only seen when erect.  It comes and goes strangely though.  It does not move along with my skin so it appears to be something that is on the shaft itself.  Sometimes when I am fully erect I can barely make it out.  It comes more into view as my erection begins to recede and then starts to disappear after it goes flacid.  My erection is nowhere near as hard or as high (pointed) as it was before my issues began.  I feel strange lump type stuff on all sides of my penis but it appears to be right where new veins are.  I have severe pain whenever my penis brushes against my clothing from all sides.  I can isolate the pain down to it hurting exactly where I have these lump-type things and mostly where the cord looking thing is on the top of my penis.  The pain is horrible.  Absolutely indiscribable and I can only put my issue into words with the one word "nightmarish". 

Honestly, I think I feel more pain when I am flacid now.  When I am becoming erect, things just feel really strange and as if my penis is straining to become erect.  I can not become erect when I am by myself, only when I am with my girlfriend.  I have noticed when watching my penis become erect that initially it starts pointing to the left quite obviously.  As it becomes more erect, I can watch it try to straighten itself out and then fall back to the left.  Then as it becomes more erect, it will try to straighten outself out again and then once again fall to the left.   

It is as if my penis keeps trying to become full everywhere but that something (plaque?) is blocking the blood from flowing completely on one side.  Sometimes, a good enough amount will get through to make that side erect, but then it looks as if it then rushes back out.  Perhaps due to venous leakage? 

Sorry it took me so long to respond to your post Sam.  I just now saw it.  I am new to this stuff, just began having symptoms in early June.  I wish I didn't have the word Peyronie's in my vocabulary...  I had never heard of it until June and nobody I have mentioned this to has heard of it either.  There needs to be more awareness of this ridiculous disease.  Perhaps if the awareness of just how devestating a disease this is was out there in the open in some way, then future patients of urologists would be avoided the non-caring attitude that I and many others I have talked to have experienced. 
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: GarryC on January 04, 2009, 06:24:12 PM
Hi All,

I was recently directed to this forum from the DD forum.

My situation is this....

Around 5 years ago I was diagnosed DD, I am now 50.

Around 3 months ago I noticed a lump in my penis at about halfway, it appears to be attached to the urethra not the structural tissue, and another "fibrous" lump at the head, they don't appear to connect physically.

I have no curve or bend however I do get some pain when erect.

Spontaneous erections seem to be on the decline and I am losing sensitivity.

My GP didn't appear concerned and simply said it is connected to my DD however here I am.....

Any input greatly appreciated.

Garry
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Mick on January 04, 2009, 10:24:20 PM
What's DD?
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: GarryC on January 04, 2009, 10:33:51 PM
What's DD?

Dupuytren's Disease

Cheers
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Mick on January 04, 2009, 10:36:12 PM
I suppose I should have known that, because I have it myself, but I'd never heard of the short title.
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: alcohen on January 05, 2009, 04:36:19 PM
Interesting...  Mine seems similar to this.  I have a lump (or a series of lumps) that form an almost cordlike structure that look like they are right in line with my urethra.  My other lump is near the top of my penis on the top side before the head.  It started out as a lump and a ring of puffy tissue followed.  Spontaneous erections went from all the time to some times to NEVER.  My bend also continues to get worsen...
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Tim468 on January 05, 2009, 04:51:57 PM
A lot of folks call it DC for Dupuytren's Contracture, as well.

Welcome Garry!

Some "generic advice" for someone new to the boards - hopefully of help to you.

Read the "Child Boards" and you will find a lot of helpful information. You will see that a lot of potential help is there.

Other than reading here, it is generally wise to determine that it really is Peyronie's Disease. To be sure (for some folks self-diagnose and get it wrong), go to a urologist. A "good" urologist is something of a Holy Grail here....

 "Good" is subjective, but many of us need to search (long and hard) to find one willing to provide us supportive help.

I strongly advise getting well-informed. This is where we can do a lot to learn more here, as individuals helping ourselves and others.

It seems like things are happening at an early stage for you, and so you are at a lower risk for making hasty decisions or choices. This is the time to sit back and to gather some information before acting. Thankfully, it does not sound like you are in a situation where surgery is being recommended.

The one area to not wait too much is in maintaining regular erections, which are good for erectile tissue (use it or lose it, they say, and it may be true for Peyronie's Disease). Therefore, getting better blood flow with Viagra (or other similar drugs) may help, as well as using the vacuum erection device (VED) which will pull fresh blood in (like an erection) as well as stretching out the tissue to prevent or fix contraction and worsening of the angle.

It may be also true that starting a broad spectrum vitamin E, and checking levels of vitamin D are something you could get going on sooner than later. Pentox may be of help too, even (especially?) early in the disease process.

Welcome! Read up here and I hope this message helps.

Tim

Tim
Title: Re: Defining Peyronies Disease - The struggle to understand the disease
Post by: Hawk on March 17, 2012, 02:08:39 PM
The following is the full discussion on Defining Peyronies Disease. I insert this post at the end only to explain this retired topic that grew out of a very lengthy exchange that started somewhat off topic in the "Causes of Peyronies Disease" topic.    This discussion argues just what is and what is not Peyronies Disease.  We tried to differentiate between Peyronies Disease and any other conditions that exists that may cause deformity of the penis.  We speculate whether Peyronies Disease is sometime used to refer to a broad set of conditions resulting in less rather than greater understanding of the disease

Please note that in order for the community to effectively communicate we must speak the same language and use 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.  

New members will probably not find this discussion to have any practical application in treating or dealing with Peyronies Disease.  If you feel yourself getting bogged down in the discussion or if you feel like yelling "OK enough already"  then just move on and read something else.

There is a much condensed version of this discussion at the following location
 Just click the blue quote section to go there.  It will present 90% of the main points with about 10% of the reading.