Progression of Peyronie’s Disease
To say the least, the progression of Peyronie’s disease (PD) is variable and unpredictable. The one constant factor about PD is that there is no constant factor – most anything about PD can be a little different than the next man. The medical literature describing PD is confusing because of the need to describe the wide variation of its natural development, with the disease described by one medical researcher or clinician being much different from that described by another. With so many different presentations created – with none of them being necessarily wrong – it is difficult to get a clear picture of what to expect in a case of PD.
If your Peyronie’s penis is causing sexual distress, you might be interested in the in-depth and detailed discussion and loads of helpful information found in Dr. Herazy’s second book, “Peyronie’s Disease and Sex.”
Progression – or natural history of Peyronie’s disease
The term “natural history” means the usual or natural progression of a disease in the average individual; it is the usual way a disease advances in most people. The problem with PD is that researchers provide greatly different reports of what happens during the progression of this problem. This makes it difficult for both the doctor and patient to know what to expect with PD, or most especially determines success and failure while attempting to treat PD. This is why it is so difficult to find a treatment for PD: you never know if a particular treatment caused an improvement or if it would have happened anyway. What will be provided in this discussion is a broad average of the natural history or progression of PD.
It is fairly common for a man who has PD to first discover it as a small lump or bead below the surface of the penis like “some kind of varicose vein or something” that is painful to touch. Even this is not always the case, since there are reports of 38-62% of patients who are unaware of a well-defined and palpable scar or plaque found during a physical examination.(1-4) In another report, out of 208 patients examined for erectile dysfunction, 20% had undiagnosed PD(5). There is often no distortion at the very early stage of scar or plaque development. In most cases, the active phase is associated with either one or more of painful erection, a palpable scar or scars of variable size, or bending of the penis. Up to 30% of PD cases present with painless curvature.
In later scar development there is often, but not always, a progression or worsening of pain and enlargement of the plaque. Pain can be variable: absent, mild or so severe as to make sleep impossible; pain felt only when the area of injury is touched, or it can come and go on its own, or it can be constant even without touch. Most men only seek professional care if there is pain; usually the bump alone will not prompt the average man to seek professional care about the developing problem. Pain of PD may worsen not from the problem worsening, but from additional new injuries to the tunica albuginea that occur during sexual intercourse.(6) For this reason great care and adaptation of sexual technique are necessary to prevent re-injury and worsening of the initial problem.
Basically there are two stages in PD, the acute and the chronic. Both the acute and chronic stages are of variable length, duration and intensity. During the acute or inflammation phase the majority of scarring and bending occur. From 5% to 50% of men with PD (depending on the study you read) the condition never goes beyond the acute inflammation stage and it resolves within a year or so, without treatment.(7) Simply because the condition sometimes improves without treatment, some doctors may initially recommend a wait-and-see approach to a patient.(8) While the decision to do nothing during the acute stage of PD appears to be popular and common medical thinking, the doctors of PDI do not advocate this position. PDI recommends active care as early and as aggressively as possible, before or during the remodeling stage of the scar.
During the first 12-18 months or so after initial scar formation, a variable penile distortion response can occur during the third and final phase of scar formation while remodeling takes place. Since there is significant change taking place in the tunica albuginea during scar remodeling, an increase of distortion can occur, or it can remain the same, or it can resolve without treatment and disappear spontaneously. In most patients the curvature remains static as the scar matures although, in some cases, it can worsen as fibrosis develops and the scar contracts. In about 25% of cases the scar becomes calcified, and in about 25% of those who develop calcification it progresses to actual bone formation within the tunica albuginea.(6, 9, 10) It is popular medical thinking that after the scar has matured, the status of the tunica albuginea is unlikely to be changed by non-surgical treatment.(10) Our experience is that this is not necessarily true; treatment of the problem at this later stage is still advocated, although will likely require a longer, more aggressive, and more dedicated effort to achieve possible success, if at all.
Whether the onset of deformity associated with the active phase is gradual or sudden, pain usually resolves and the active pathologic process stabilizes after 12-18 months. The chronic stage is said to occur when the pain disappears and distortion becomes stable. Most medical sources report that once the chronic stage has been entered, no treatment other than surgery will be effective; PDI’s experience does not agree with this common medical opinion.
Although there are many different reports and opinions concerning the eventual outcome, most report that roughly 50% of men with PD will improve to some variable degree (ranging from minimal improvement to complete remission), and 50% will get worse with time. One study found almost 50% of men never experienced the problems with bending of the penis, and typically, the pain associated with the acute phase of the disease resolved with time. The degree of bending or distortion, as you would guess by now, ranges from minimal to severe. Deviation of 5°-10° is not uncommon, often can go to 20°-30° and, as seen in the illustration below, the curvature can go to 90°, or even greater in some cases.
Peyronie’s disease can cause severe and debilitating distortions,limiting and complicating life
Even the less extreme or exaggerated deformity can totally prevent successful sexual intercourse by either making penetration impossible, or painful for either or both partners. The most severe penile deformities have been described as a “J”, or “cane handle”. A large scar like a doughnut around the circumference of the penis can result in a “bottle neck” deformity; during erection, poor filling of the penis from the scar forward to the head of the penis causes the distal portion to remain small and flaccid. The penis can also twist in response to scar placement into a “cork screw” deformity. Obviously, not all difficulty and pain is physical in these situations. Much of the hardship and duress involves the great emotional personal and interpersonal stress that commonly occurs.
From our experience, the likelihood of spontaneous remission without treatment is most common in the younger individual, and becomes less likely in the older population who develops PD later in life. However, with treatment that is suggested by PDI, the advantage for recovery could be regained by those older individuals who are most aggressive and faithful to a full range of treatment options. The same is true for partial improvement of pain, distortion and impotence problems: those who aggressively follow a broad and diverse schedule of treatment options that are suggested stand a greater potential to increase their ability to heal injured tissue and recover.
Many hold to traditional medical thinking that PD will only occasionally, if ever, disappear completely. This school of thought estimates that approximately one half of individuals have a progressive form of PD, and the other half has a stable form. The final status of this problem can range from a static and painless plaque without any penile curvature or angulation, to painful erections accompanied by curvature significant enough to prevent sexual activity.
You can now understand why PD has been called “the nightmare of the urologist”. For those who have it, it is no fun either.
To read success stories, click on Peyronie’s disease treatment testimonials.
Peyronie’s disease treatment
What this section sets out to explain is that PD is extremely variable, perhaps more than most medical conditions. It is this very unpredictability and wide variation that should give hope to the Peyronie’s disease victim. Why? If PD can just disappear in a fair number of cases, then why not you? If it often disappears in the younger man, and tends to worsen or be permanent in the older man, then if it were possible to be more like a younger man (read “healthier” here), maybe it would be possible to improve the odds for recovery. Our goal is to suggest as many possible ways to boost and support your metabolic chance for recovery as we can, so that you are better prepared to heal like a younger man. All of this will be covered in the Peyronie’s disease treatment sections.
1. Stecker JF Jr., Devine CJ Jr.: Evaluation of erectile dysfunction in patients with Peyronie’s disease. J Urol, 132: 680-681, 1984.
2. Amin Z, Patel U, Friedman EP, Vale JA, Kirby R, Lees WR: Colour Doppler and duplex ultrasound assessment of Peyronie’s disease in impotent men. Br J Radiol, 66: 398-402, 1993.
3. Pryor JP: Peyronie’s disease and impotence. Acta Urol Belg, 56: 317-321, 1988.
4. Williams G, Green NA: The non-surgical treatment of Peyronie’s disease. Br J Urol, 52: 392-395, 1980.
5. Gelbard MK, Dorey F, James K: The natural history of Peyronie’s disease. J Urol, 144: 1376-1379, 1990.
6. Devine CJ Jr, Somers KD, Jordan SG, Schlossberg SM. Proposal: trauma as the cause of the Peyronie’s lesion. J Urol 1997;157:285-90.
7. Am Fam Physician 1999;60:549-54.
8. Mayo Foundation for Medical Education and Research (MFMER); 1998-2004.
9. Devine CJ Jr. Introduction to the International Conference on Peyronie’s disease. J Urol 1997;157: 272-5.
10. Williams G, Green NA. The non-surgical treatment of Peyronie’s disease. Br J Urol 1980;52:392-5.