Peyronie’s Disease (PD) is characterized by the development of a fibrotic plaque (scar tissue) or hard bump of the outer layer of the erection chambers in the penis. It is both a physically and psychologically devastating disorder that is associated with various penile deformities including curvature, shortening, narrowing, hinging, pain and erectile dysfunction. PD may affect up to 9% of men. The natural history of the disease is controversial but recent studies show only 13% of men with PD will have their PD spontaneously resolve.
The exact cause of PD is unknown, however most experts believe that repetitive trauma to the erect penis during sexual activity causes inflammation within the penile tissue. This inflammation will develop into a fibrous plaque in some men. Pain is the most common symptom of the disease at the early stages. In the later stages, the pain will disappear but erectile dysfunction may occur. The most common long term problem is penile curvature. This may be modest or severe. The curvature may not interfere with intercourse at all, may limit positions where intercourse is comfortable (for both partners), or may make intercourse impossible. Many men will notice an indentation of their penis where the plaque is located. This may destabilize the penis, and make it bend during intercourse. The penis may not be as rigid past the indentation or curvature. In some men, the plaque goes all of the way around the penis, and they will notice an “hour glass” effect, where it looks like there is an indented ring around the whole penis.
The sexual problems that result can disrupt a couple’s physical and emotional relationship and lead to lowered self-esteem in both partners.
The diagnosis is easy to make. If you develop a lump in the penis, usually, but not always associated with pain, erection issues, and penile curvature (or any combination of the three) you have PD.
Before beginning treatment, your specialist will take a very thorough history. He will ask you about any disorders that are commonly associated with PD. The most common of these is Dupytren’s Contracture (which is scar tissue of the tendons of the hand that limit movement and cause pain.) Most important is to get the history of the PD itself. When did it start? Did you have a particular incident where you injured your penis? (The most common cause is hitting up against the pubic bone while thrusting.) Do you have curvature of the penis? Is it progressing, or has it been stable? If stable, how long has it been stable? Do you still have pain, either with or without an erection? Is it getting better?
He will also ask you to quantify the curvature in terms of how many degrees and in what direction. It may be useful to take a picture from the side and from the top of the penis while erect, to provide important visual information about the amount of curvature you have developed.
When you are erect, besides a curve, do have an hour-glass appearance to the penis? Does it hinge when you try to penetrate? Is your erection less rigid, past the start of your curvature?
Have you developed some erectile dysfunction, in terms of getting and maintaining an erection, in addition to the curvature? How much pain are you having, and is the pain itself getting in the way of your having and maintaining an erection?
It is important to understand how much it has affected you and your partner, if you have one. (Many patients without a partner appropriately desire treatment, as the PD will affect their ability to function sexually with a partner in the future). Have the changes interfered with sexual relations? Are there certain positions you can’t use? Can you penetrate at all? Does it hurt you or your partner when you do penetrate? Is the curvature psychologically devastating, even if it has not really affected your sex life mechanically?
Next, your provider will do a focused physical examination of the penis and testes. He’ll be looking for evidence of scar tissue within the penis. You may even be able to feel this yourself by squeezing your penis gently through your fingers along its length and seeing if there are any hard nodules.
The physician will check the sensation of your penis with a biothesiometer (a painless test that measures how intense vibrations need to be for you to sense them). He will also evoke an erection in the office, and evaluate the curvature, and function of the penis. This includes noting the amount of curvature (in degrees) and the direction(s). Also, is the penis less erect past the curvature? Is there a hinging and/or hour glass effect? Importantly, he needs to measure the distance from the tip of the erect penis to maximum place of curvature.
Using ultrasound, he will look at the density and location of the plaque(s.) He will also evaluate the blood flow into and out of your penis, which helps assess your erectile function.
Your physician will usually check your hormone levels by taking blood from your arm.
There are a many of proposed treatment options for Peyronie’s Disease. These include oral medications, methods for mechanically stretching and molding the penis, injections into the scar tissue, and surgery. Surgery, though quite effective, is used only when less invasive techniques have not worked.
The most common suggested oral therapies are Vitamin E, Colchicine, Potassium Aminobenzoate (POTABA), Tamoxifen Citrate, Carnitine and Pentoxyfylline.
Pentoxyfylline is an oral medication that has combined anti-inflammatory and anti-fibrogenic properties. A study by Safarinejad, et al. showed 36.9% of patients reported a positive response to treatment vs only 4.5% who received placebo. Pentoxyfylline is taken two to three times a day. Pentoxyfylline appears most beneficial during active disease. It your Peyronie’s is deemed to be in the chronic stable stage, it is almost assuredly not worth taking.
The other oral medications show no evidence of benefit in reducing penile deformity.
Intralesional therapies (injecting medications directly into the penile scar tissue) include collagenase, verapamil and interferon.
- Collegenase (Xiaflex)
Xiaflex is the only FDA approved medication for the treatment of PD. In large studies, patients who received Xiaflex had an average improvement in curvature of 35% as compared to patients who received placebo. The principle is that the collagenase dissolves the collagen, by breaking it down. Then with molding and stretching the curvature will lessen and decrease, since the scar tissue has decreased.
Currently, Xiaflex is approved to be used in up to eight injections. These are given (if needed) in cycles of two. At the beginning of each cycle, your provider will assess the degree, nature, and point of maximal curvature in your penis when erect. The Xiaflex will be injected at the point of maximal curvature. After 5-7 days, the second injection in the cycle will be given. You will be taught how to stretch and mold your penis, both manually, and often with one or more devices. You will need to refrain from masturbation or any sexual relations (involving your penis) from after the first injection, until two weeks after your second injection. It is common, though not inevitable, for you to have modest discomfort, but significant swelling and or bruising after an injection.
It is crucial that after the Xiaflex injections the penis is stretched and molded, both to further weaken the plaque, and to make sure that when it heals, it heals straight.
Six weeks after the second injection of each cycle, you will be re-evaluated by your provider, to see what progress you have made, and to see if you still meet the criterion for Xiaflex. The most important risk of the Xiaflex, is the extremely small possibility of penile rupture. This means that the lining of the erection chambers where the scar is doesn’t just weaken (allowing for straightening) but actually bursts apart. Unfortunately, this involves surgical repair, which is done soon after the rupture. Most of the ruptures reported occur when men have engaged in relations prior to the two weeks after the last injection has elapsed.
How successful this therapy will be is very dependent on the skill of the physician doing the injection. It is important for your physician to localize the plaque and make sure he is going into it in the right plane, and injecting the medication into the plaque itself, and not the surrounding tissue.
Dr. Werner was involved in the clinical trials that led Xialfex to get FDA approval, and he was one of the few physicians who treated the most patients. Because of the expertise needed, he is often referred patients by other urologists, with less experience.
- Verapamil Injections
Verapamil injections have shown positive results in reducing curvature and improving symptoms. The largest study to date showed that 60% of the men improved, by an average of 30 degrees. However, the data does not compare to that of Xiaflex in terms of success rates, and is currently used almost exclusively when Xiafelx is not available.
- Interferon Injections
Interferon injections into the plaques, have been found to have questionable efficacy, and is currently rarely used.
External/mechanical therapies include penile traction devices, and vacuum erection devices, as well as manual molding, stretching and massaging the penis. They are a very important part of the process, to help lengthen and straighten the penis, after the scar tissue has been weakened by the injections. A vacuum erection device can be used twice daily for 10 minutes. In a small study of 31 patients, 21 showed a reduction in curvature between 5-25 degrees.
Surgical options can be considered as part of a treatment plan for patients with PD, but only after it has persisted for more than twelve months and has been stable for a minimum of six months. (You do not want your penis to be surgically straightened, only for the curvature to continue to worsen. ???)) Surgical intervention should not be performed during active disease progression. Surgery is not recommended in patient’s whose curvature is minimal and not impacting intercourse.
There are three main types of surgeries:
- The first is to correct the curvature by shortening the side of the penis directly opposite the curvature. This “evens” out the penis, and straightens the curvature. This should only be used if the patient has good erectile function, but just a mechanical problem in terms of curvature or indentations.
- The second type may be used if a man has even more significant curvature, feels very strongly that he does not want any shortening of his penis, and does get good erections in terms of getting and maintaining a rigid penis. The plaque can be removed and then replaced with a graft.
- If a man has significant difficulty getting and maintaining the erection, in addition to a significant penile curvature, it is often worthwhile to place a penile prosthesis. This gives him the ability get and maintain a rigid erection while straightening the penis simultaneously.
Often, men will use a combination of Xiaflex injections combined with manual stretching/molding and an external device (VED or penile traction). Occasionally, a man will also want to take Pentoxyphyline.
While going through evaluation and treatment it is important to remember that no matter what, if you are adequately motivated, you will be able to get an erection.
As always, the less invasive methods are used first. But if these do not work, or do not work adequately, surgical treatment in the right hands has an incredibly high rate of success.
After all this discussion you can understand why the evaluation and treatment of PD, is subtle. It requires that your provider(s) take the time to understand what is going on and what you want. You’ll be making difficult decisions about what treatment you’ll undergo. Once a plan of treatment is determined, there is a significant amount of expertise required to incorporate the different options as well as to perform the various procedures involved in correcting the curvature. It is truly advisable to see a specialist when facing these decisions.
Michael A. Werner, M.D. has been treating Peyronie’s Disease for more than 25 years. He recently was an investigator in the Xiaflex trials. He prides himself on taking a team approach to evaluating and treating your Peyronie’s Disease. We understand that there are many options and that of course, every man and every couple experiences Peyronie’s Disease differently. We will also work with you to help you maximize your sex life while treatment is ongoing.