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PROGRESSION
oF
PEYRONIE'S
DISEASE
Overview
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.
Progression – or
Natural History
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 erections, 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.
Russian Roulette
Standard medical
care of PD often is to do nothing for the first year or so.
The medical thinking is, “In half of the cases the PD goes
away on its own. If it doesn’t, we can always do surgery.” For
the half that doesn’t go away, it either stays the same or
gets a lot worse. If the PD results in an acceptable level of
pain, an acceptable degree of penile distortion or an
acceptable level of sexual impairment, the outcome of that
case of PD is said to be satisfactory. If the PD worsens so
that pain and/or distortion are intolerable, or intercourse is
impossible, or impotency results, then surgery is offered as a
solution.
A man with PD should know that the medical profession has a
very low standard by which to judge a satisfactory outcome of
this wait-and-see treatment approach. He should know his
doctor is willing to take a chance like this with his penis,
when there are reasonable conservative treatment options.
PDI
thinks this is a poor attitude and a bad strategy.
The PD watch-wait-and-do-nothing strategy sounds good only to
the surgeon. To
PDI
it sounds like playing Russian roulette
with very bad odds. In Russian roulette there is one bullet
put in a six-cylinder gun; that’s a one out of six chance of
losing. In the wait-and-see approach, half of the cases clear
up spontaneously; that’s a one out of two chance of loosing.
Or to put it another way, that’s like having three bullets in
the cylinder. No thanks.
Better to do all that you can for your PD, as soon as you can,
using as many of the safe and scientifically grounded options
that are known to have some success in helping the PD scar
heal. If after following an aggressive alternative medical
program there is less than complete repair and healing, as can
happen, then surgery can still be used. For further
discussion, click on Heads
You Win, Tails You Don’t Lose. |
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.
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 donut 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.
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 PD 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
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.
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