Hello,
Is it really possible that Peyronie's disease actually completely disappears?
One often-quoted study says that 13% of cases improve spontaneously after one year. This, however, includes very small curvature or plaque reduction. However, I have not heard of one single reliable and medically documented story of complete remission. It seems that even if some treatments appear to be effective in reducing or even dissolving the plaque, the tunica can never regain its original elasticity.
Can you give us your thoughts about this please.
Best regards,
Leo
Greetings Leo,
Thank you for the excellent question.
How often, and to what degree, Peyronie's disease spontaneously recovers is such an interesting and important PD topic that I wrote, "Spontaneous Remission and Natural Cure of Peyronie's Disease." You might consider reading this also for additional ideas.
Anyone who has looked for help with Peyronie's disease knows why it has been called the bastard-child of medical practice. No one should be surprised it has never been the subject of investigation to determine the frequency or degree of spontaneous recovery or natural healing. I could not find any information about what criteria is used to determine a complete response to treatment or a spontaneous remission of Peyronie's disease. For example, when all outward signs of cancer disappear after treatment, this is called a "complete remission" or a "complete response." These terms do not necessarily suggest the cancer has been cured. It only means the cancer cannot be detected in a way that it was previously used to identify it. If after treatment the cancer is still present but in a reduced capacity to incapacitate the patient or of a reduced size, it is called a "partial remission." In regard to Peyronie's disease these concepts might also apply, but this has not been worked out clinically for PD. For this reason, the words we use (remission, recovery, response, cure, improvement, complete, partial) are subject to controversy because they have not been defined in relation to Peyronie's disease.
Thus, there is room for interpretation when you ask if Peyronie's disease ever "completely disappears." A consensus would have to determine if a practical (functional) or anatomical (structural) definition of recovery was to be used for Peyronie's disease. Previously I have written, "the average man would not care at all that he had Peyronie's disease if it did not cause a penile distortion that denies him from having sexual intercourse. If the Peyronie's lump did not interrupt sex activity, the problem would be essentially ignored."
While i understand the thought and motive behind asking about a study of spontaneous remission of Peyronie's disease, I believe it is unlikely for the pharmaceutical or medical industries to actually spend money to research if this problem goes away on its own. Their focus is far more likely to be directed toward drug creation or surgical advancements. In preparation for writing this reply I Googled "spontaneous remission cancer" and "spontaneous recovery flu" and could not find any medical studies for those searches. That this information is not available should not be interpreted that these things do not happen, but only that no one yet has taken the time, effort and money – or has a vested interest – to study these topics.
For a majority of men, from a practical or functional standpoint, restoring sexual function would define "complete recovery" if this occurred as a result of direct treatment, or "spontaneous remission" if this occurred without treatment, regardless if the Peyronie's plaque persisted or the tunica albuginea was less elastic. To underscore this prevailing and practical attitude that men take about their Peyronie's condition, I have communicated with many men who have told be that they like having Peyronie's disease because their particular direction and degree of penile curvature increased the sexual pleasure of their partner and thus they saw themselves as better lovers. Their interest in correcting their Peyronie's disease was equally practical and sexually motivated: they were concerned that if the curvature worsened, they would not be able to engage in intercourse. Conversely, from a clinical or anatomical standpoint, restoring previous physical normalcy (external appearance of the shaft, elimination of the internal fibrous plaque, complete elasticity of the tunica albuginea), would define "complete recovery" if this occurred as a result of direct treatment, or "spontaneous remission" if this occurred without treatment. Without these terms being defined it is difficult to communicate accurately.
Yes, I am aware of that study reporting 13% of cases improve spontaneously; others reports suggest up to 50% of Peyronie's disease cases simply go away without treatment. This variation in numbers is probably due to a different set of criteria for determining what degree of improvement constitutes a real improvement or recovery; this is discussed in the 3rd paragraph. Given the nature of the problem It is easy to understand why there is still controversy and revision (usually upward) of the reported rate of occurrence of PD in the general population, to say nothing of the rate of spontaneous remission for the problem.
When I developed Peyronie's disease I struggled frantically looking for a way out of the Peyronie's nightmare. After reading reports of 20-50% spontaneous recovery from PD my thoughts turned in a more positive and productive direction. The pivotal insight that occurred to me was: "If 50% of men heal their own PD, then the body has a cure – even if the MDs do not. All I have to do is increase my immune response to this PD scar in whatever way makes sense to me, and I believe I might be able to heal my problem like those lucky men who spontaneously correct their own problem. Now I am in control." Before that I held the common negative and hopeless victim mentality displayed on many of the Peyronie's forums. This little bit of information so encouraged me and uplifted my thinking, that I eventually developed the treatment protocol that enabled my body to heal my PD problem. This same protocol (now improved in several significant ways) has since been used many hundreds of times by men who learned about it on this PDI website.
From my experience in working with men since 2002 I have used the informal, uncommitted, and long-distance format of the internet, emails and telephone calls. Since I am not conducting formal research, I have no way to control, monitor or verify how anyone is conducting his PD therapy plan. Men do what they want to do. I can only offer suggestions and hope my message gets through. Not only does everyone seem to create a slightly different therapy plan, but each man goes about using his plan in a different way. The non-uniform and irregular application of the ideas you see on the PDI website makes it difficult to evaluate effectiveness or degree of improvement achieved. Not only that, men are notoriously bad communicators about this aspect of their private life. Once Peyronie's disease is eliminated from a man's life he quickly disengages from the problem and happily returns to his previous life, rarely contacting anyone about his success. They gladly try to forget about the condition that so humiliated them and nearly ruined their lives. Men are reluctant to discuss or report on the stigma of diminished size, erectile dysfunction and disfigurement associated with Peyronie's disease. For these reasons the number of men who experience spontaneous improvement of their PD will always be much more speculative than even the number of men who have PD, which is wracked by speculation for the same reasons.
You are correct, there are no formal medical studies of complete Peyronie's remission. But what of those published medical statistics reporting 13-50% of cases that get well without treatment or outside intervention. Is that not more than the medical acknowledgment or the single story of complete remission you asked for? Further, what of the hundreds of urologists and family doctors each day around the world who advise their newly diagnosed Peyronie's patients to "come back in six months to see it it goes away"? Aren't each of these MDs implicitly saying that from their experience they see a sufficient percent of PD cases clear up on their own, thus justifying the standard wait-and-see strategy they all use? "Wait-and-see-back-in-6-months" is part of the standard medical protocol and must exist for some reason; do you think that spontaneous remissions happen often enough to build a treatment protocol around it? I do.
I offer a simple speculation about the condition of the tunica albuginea after favorable Alternative Medicine treatment, because I do not know. The body eliminates to the best of its ability what it does not need. I have a scar on my knee from a childhood injury. Over the years it has slowly faded and now is barely visible. I assume that if there is no useful purpose for the PD scar within the tunica albuginea, the body will pick up the collagen fibers over time. This might not be a fast process like the body removing the cells of inflammation, but it should at least in theory happen if only because the body is designed to eliminate foreign matter. Along that line of thought, I am a retired chiropractor with a highly refined sense of touch developed over 42 years of practice. When I report that I cannot find any evidence of my previous gang of PD scars, you can believe that they are either gone or so dramatically diminished in size. Of course, this is ultimately speculation because surgery would be required to verify the actual state of my tunica.
Lastly, it is difficult to know how to label my particular improvement of Peyronie's disease or the experiences of those men with whom I have worked. They no longer come to the PDI site for treatment information because they are apparently satisfied with their previous Peyronie's problem after following their version of PDI therapy protocol. I do not know if I can say my body eliminated or cured my Peyronie's disease, or not. I do not know if I can say I had a "complete remission" or a "partial remission" because those terms have not been defined clinically.
All I know for a fact is that back in 2002 when I was at my worst, I could easily describe 4-5 different plaque primarily on the left and dorsal aspect of the shaft. My primary distortion was a combination 35 degree curve to the left, a ten degree curve upward, with a counterclockwise rotation. I say primary distortion because twice while I had this combination curve and twist, it was replaced for a few weeks by a severe bottle-neck deformity that made me sick to look at. After following an aggressive and faithful PD therapy plan that I devised over many months, all of that went away. I was able to monitor the slow and gradual reduction of the size, shape, density and surface features of each of those 4-5 plaque. As I observed them slowly fragment and disappear, my distortions disappeared and my lost length and girth returned. Today I cannot find any PD plaque and my shaft is straight. I have worked with many men who have reported various stories along that same basic outline. Of course, some men respond better to Alternative Medicine therapy than others; not all respond well, and some do not get any improvement at all. When I learn of men who are not making improvement I can usually trace it back to a small and non-aggressive application of the PDI therapy concepts that is revealed by meager and irregular purchase of therapies. Conversely, those men who report better results ask more questions, follow a more faithful and aggressive plan of action, and overall seem to be more focused and serious about their eventual recovery.
Back to your original question, "Is it really possible that Peyronie's disease actually completely disappears?" By that question I take it that you mean, "Is it possible that the tunica albuginea returns to a completely normal state after what you call a self-repair, self-healing or spontaneous remission?" To that question l answer that I do not know. I must assume that in order for my curvature pattern to improve, for my scars to be undetectable, for my lost length and girth to have been returned, that some favorable and demonstrable tissue change must have occurred within substance of my tunica. This in turn should have caused the tunica to become more elastic than when it supported the nasty Peyronie's plaque. Speculation, for sure, but logical.
For me, and I believe for the men who come to the PDI website looking for some straight information about what they can do to help themselves get well, I wish to say we do not care if the tunica albuginea completely returns to normal or not. I am satisfied when a man tells me he cannot find his PD scar any longer; that he can have intercourse for the first time in many years; or that his penis is now straight. At this time I am more interested in learning how to more effectively help the men who have Peyronie's disease so they can more quickly and efficiently eliminate their problem, than I am in splitting hairs while defining the words cure, healing, recovery and remission.
Again, thanks for the great question that gave me the stimulus to put a few thoughts on the internet that were not there previously.
Good luck to you and I trust that you are successful in dealing with whatever prompted your interest in this subject. If you have interest in learning about Alternative Medicine Peyronie's disease treatment, please let me know. TRH