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[George999]

Liam,

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

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

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

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/

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

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

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

[Tim468]

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??     I did...

Tim

[j]

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. 

[Liam]

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. " )

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]

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  )

[Liam]

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.

[Larry H]

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.

[Liam]

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.

[percival]

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

[Larry H]

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

[Hawk]

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.

[Tim468]

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

[Hawk]

Thank You!


PS: Exclusion by Definition- A tactical logical fallacy

[Liam]

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. 

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.

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.

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 Erectile Dysfunction, 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.

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.  

[Hawk]

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

[Tim468]

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.

[George999]

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.

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

[Larry H]

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

[George999]

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

[Liam]

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.

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.

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.

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.

[Tim468]

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

[George999]

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

[Liam]

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?

[Larry H]

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

[George999]

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

[Hawk]

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.

[Liam]

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.

[Larry H]

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

[Liam]

Larry, will you post a link to the Autopsy study? 

[Hawk]

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.

[Larry H]

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

[Hawk]

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 Erectile Dysfunction 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.

[Liam]

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. 

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, Erectile Dysfunction. 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, Erectile Dysfunction. 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

[Hawk]

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?

[Liam]

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.

[Hawk]

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. 

[Tim468]

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 Erectile Dysfunction because of the time they grew up in. It is also possible that they had Erectile Dysfunction 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

[Larry H]

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

[Liam]

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. 

[Liam]

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

[Larry H]

Liam:

You are one articulate, and understanding man!!!

Larry

[Hawk]

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.

[Liam]

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.

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.

[Hawk]

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.

[Liam]

...unless someone else posts 

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.

[George999]

* 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.   

[Liam]

Or I was dead wrong.  If that happens, I will be happy to admit I'm wrong.

[Old Man]

Guys:

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

Old Man

[Liam]

No - not really

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

[Old Man]

Touche'

Old Man

[George999]

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

Here we are again. Struggle to understand.

Started by Jack1909 General Discussion About Erectile Dysfunction

Do i even have Peyronies Disease?

Started by orriw Open Questions or General Comments (that won't fit under any other topics)