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Author Topic: Defining Peyronies Disease - The struggle to understand the disease  (Read 100598 times)

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Hawk

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Re: George - Induration
« Reply #150 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
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Liam

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Re: thhhhhhhh
« Reply #151 on: August 21, 2007, 08:51:28 PM »

:::::biting my tongue:::::: :P

 :)
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Liam

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Re: Sorry - Couldn't Do It - The Door was Opened
« Reply #152 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.

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George999

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Re: Induration, Plaque, etc.
« Reply #153 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
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Hawk

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Re: Induration, Plaque, etc.
« Reply #154 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
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Tim468

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #155 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
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Hawk

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #156 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.
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Liam

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Re: What Have I Done?
« Reply #157 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
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Liam

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Re: Secondary Peyronie's
« Reply #158 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.

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Hawk

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Re: Secondary Peyronie's
« Reply #159 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.


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Liam

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Re: Peyronies Disease = Fibrosis of the Penis
« Reply #160 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.

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


Peyronies Disease is the fibrosisThe 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?


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Hawk

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Re: Liam- Peyronies Disease = Fibrosis of the Penis
« Reply #161 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.
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Liam

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Re: The Big Peyronies Disease Umbrella
« Reply #162 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 ;)  .
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Hawk

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Re: The Big Peyronies Disease Umbrella
« Reply #163 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   ;)
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Liam

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Re: Making Progress
« Reply #164 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.

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Hawk

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Re: Liam - Atypical Peyronies Disease
« Reply #165 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.
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Liam

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #166 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
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Hawk

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #167 on: August 27, 2007, 03:52:57 PM »


 ::) :o ;D
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Liam

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Slow Healing Wound
« Reply #168 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!!!
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Hawk

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Re: Liam
« Reply #169 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"
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Liam

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Re: Exact Quote
« Reply #170 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 ;)

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Re: Liam
« Reply #171 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!

 ;)
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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #172 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
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Re: Hawk - Quotes
« Reply #173 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
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"I don't ask why patients lie, I just assume they all do."
House

Liam

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Why do we need labels? Can't we all just get along?
« Reply #174 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.
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Tim468

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Further definitions
« Reply #175 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.
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

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Defining Peyronies Disease - The struggle to understand the disease
« Reply #176 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
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George999

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Re: p53
« Reply #177 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
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Olaf

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Diagnosing & Treating Peyronies vis-a-vis other anomalies
« Reply #178 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?
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Tim468

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #179 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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Tim468

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #180 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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

karthik

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #181 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!
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LWillisjr

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #182 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.
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Les - 10 yrs Peyronies Disease free
My History

karthik

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Will the pain decrease?
« Reply #183 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
 
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Tim468

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #184 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

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52, Peyronies Disease for 30 years, upward curve and some new lesions.

sams

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #185 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
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couldbeworse

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Sure it's possible to have Peyronies Disease even when MD says you don't
« Reply #186 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.
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alcohen

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #187 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. 
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GarryC

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #188 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
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Mick

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #189 on: January 04, 2009, 10:24:20 PM »

What's DD?
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GarryC

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #190 on: January 04, 2009, 10:33:51 PM »

What's DD?

Dupuytren's Disease

Cheers
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Mick

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #191 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.
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alcohen

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #192 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...
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Tim468

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Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #193 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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

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    • Peyronie's Disease
Re: Defining Peyronies Disease - The struggle to understand the disease
« Reply #194 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.
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