Peyronie's Disease

Peyronie’s Disease is a condition resulting from scar tissue formation on the penis. The scar, which is often referred to as a “plaque,” develops on the sheath surrounding the vascular erectile tissue within the penile shaft. This may result in changes to the shape of the penis such as bending/curvature, narrowing, and penile shortening. Sometimes these changes are relatively minor, but other instances they can be quite severe. Men will sometimes experience more difficulty achieving or maintaining a firm erection as well.

It is important to emphasize that Peyronie’s Disease is a benign medical condition – meaning it is not cancerous. It will not impact your overall health, but for many men with Peyronie’s Disease it can be a source of significant distress.

Peyronie’s Disease is actually more common than you might imagine. Typically, PD is diagnosed in middle-aged men, though it can occur in men of any age, from adolescence onward. Although it tends to occur most frequently in Caucasians, men of any ethnic group may develop PD.

There are several different types of treatment for Peyronie’s Disease, and these will be reviewed in greater detail. The first step in determining what treatment (if any) is right for you is to see a healthcare provider with the expertise to diagnose and treatment Peyronie’s Disease.

Peyronie’s Disease may present with a number of different symptoms. Some men with Peyronie’s Disease experience pain in the penis with or even without an erection. This is most common with the initial stages, and the pain tends to improve and resolve over time. The plaque (scar) can be felt as a hardened area or “nodule” along the shaft of the penis. This may cause changes to the shape of the penis such as curvature or bending in the direction of the scar. There may be narrowing of the penis, and if the plaque extends around the entire penis, it may cause the penis to take on an hourglass shape. Many men also report shortening of the penis, as well as changes in the hardness of their erections. Taken together, these symptoms often make it difficult for men and their partners to participate in satisfactory sexual activity. This can create a sense of hopelessness and may lead to emotional distress.

Usually, Peyronie’s Disease happens in two stages. In the first stage (the acute phase), which may last 3-12 months or more, the plaques start to form and the penis starts to curve, narrow, or shorten. A man in this stage is more likely to have pain. In the second stage (the chronic phase), the plaque and curvature start to stabilize, but the penis usually doesn’t straighten. Pain may start to subside, but erectile dysfunction may continue or get worse.

There is a reported association between PD and a genetic disorder called Dupuytren’s contracture, in which scar tissue forms along the sheath surrounding tendons in the palm of the hand, causing the ring finger to contract inward. About 20-30% of men with Peyronie’s Disease will report a personal or family history of Dupuytren’s contracture.

Psychological Factors
It’s not easy to have Peyronie’s disease. Men with a curved penis feel a variety of emotions: anger, sadness, shame, and anxiety, just to name a few. Often, these feelings are intertwined. Let’s take a look at some of them.

Anger and Frustration
Like many illnesses, Peyronie’s disease can change a man’s life. It affects his manhood – that physical part of him that defines his masculinity. So it’s not surprising that some men with a curved penis may feel anger. They may wonder, “Why does this have to happen to me? Why can other men enjoy sex when I can’t?”

A bent penis can also lead to frustration – with the pain, with the potential inability to have intercourse, and with any relationship problems that may result. Some men get frustrated if their doctor isn’t responsive to their needs. Or, they get frustrated because they don’t know how to broach the subject with a doctor or partner.

Fear and Anxiety
Some men fear the unknown of Peyronie’s disease. Will they still be able to have erections and orgasms like they used to? Will sexual activity make the problem worse? Will the pain subside? Will their penis ever straighten? Will they ever get 100% better? Will their current partner, or future partners, find them unattractive or reject them? Will they be able to enjoy sex again?

Satisfying a partner is another great concern. Will the partner still be able to reach orgasm if intercourse isn’t possible? Will he or she be understanding and patient about the situation?

Sadness and Loss
It’s not uncommon for men with Peyronie’s disease to mourn what used to be. Intimacy with their partner may have changed and they miss that exciting connection. They may see a happy, flirting couple at the mall or an intense sex scene in a movie and grieve the loss of these aspects of their own life.

Shame, Embarrassment, and Low Self-Esteem
As we mentioned earlier, some men with Peyronie’s disease feel that their manhood or virility has been lost or damaged. They may feel like less of a person and ashamed if they can’t perform the way they used to. They may also feel embarrassed by the appearance of their bent penis, especially if they are starting a new relationship and worry that their partner will be turned off.

Gay men may be especially vulnerable, as they might feel even more self-conscious about a curved penis when a partner has no problems with Peyronie’s disease.

Isolation and Avoidance
Often, men with Peyronie’s disease and their partners separate emotionally from one another. They may not know how to talk about their situation and, therefore avoid it, making them feel more alone.

Dating and finding new sexual partners may be daunting for single men with Peyronie’s disease. Fear of seeming inadequate and embarrassment over their physical appearance can make men reluctant to start new relationships, causing them to isolate themselves even more.

Depression
Taken together, all of these emotions and feelings can escalate into depression, which may need to be addressed by a mental health professional. Research suggests that about half of men seek help from a therapist.

Emotional Impact on Partners
It’s also important to understand the emotional impact of Peyronie’s disease on partners. They, too, may miss the sexual relationship that once was, feel nervous about starting intimacy, or become distressed if the relationship suffers. Many partners want to talk about the situation, but don’t understand what Peyronie’s disease really is or don’t know how to start such a delicate conversation.

Female partners in particular may not understand the “loss of manhood.” Many women aren’t as concerned about penetration and are sexually satisfied in ways other than intercourse. So, they may not make the connection between a man’s penis, his masculinity, and what that means for him.

What can be done?
As difficult as Peyronie’s disease is, there are several ways to approach the emotional issues.

Education
Fully understanding Peyronie’s disease is a critical first step. Men are encouraged to learn as much as possible about this condition, from the possible causes to recommended treatments. Talking to a sexual medicine expert is a great place to start. Not only can a doctor help a man with his individual situation, he or she can recommend reliable books, websites, and other printed or audio-visual materials that can explain Peyronie’s disease clearly and put it into context.

Education applies to partners as well. When partners better understand Peyronie’s disease, they can help a man work through the emotional and physical difficulties, provide caring support, and help make decisions that are best for the couple.

Finding a Community
Sometimes, it helps to talk to people who are having similar experiences. Finding a support group or online community helps many men. Online forums often allow men to post and answer questions anonymously, which takes some of the pressure off. Men can express their feelings and frustrations, explain medical procedures, and share tips and advice with others who completely understand what they’re going through.

Partners can also benefit from participating in a support group or online forum, as they can discuss Peyronie’s disease from their viewpoint.

Communication Between Partners
Talking about sexual problems isn’t always easy. There can be discomfort, fear of hurt or rejection, or frustration in getting a message across. But it’s important to try. Being open about Peyronie’s disease can help both parties work through the issue and keep their relationship strong.

It doesn’t need to be one long, heavy conversation. Instead, partners can talk as much and as often as they need to. For example, they might talk about alternate ways to be intimate one day. At another time, a man may express fear of rejection and the partner can reassure him. Whatever way partners choose to discuss it, being open with each other can ease each other’s worries and support each other through what lies ahead.

Couples can face Peyronie’s disease together and work together as a team to come up with a solution. In some cases, counseling may help them sort out their feelings and learn to talk to each other in constructive, meaningful ways.

Communication with the Doctor
Talking to a doctor about a curved penis can make a man feel awkward, especially if he doesn’t know much about Peyronie’s disease. It helps to remember that doctors are there to help and that they see a whole range of medical problems – sexual and otherwise – every day. Sexual health is important to overall health, so starting that first conversation with the doctor is a first step in getting one’s sex life back on track.

Not all doctors are trained to handle Peyronie’s disease, however. Men who feel that their doctor isn’t helping can always try another doctor or ask to be referred to a specialist in sexual medicine.

Some men bring their partners to their doctor’s appointments. Partners sometimes think of other questions or other issues that need attention.

Exploring Other Ways to be Intimate
For a man with Peyronie’s disease, intercourse can be painful, difficult, or even impossible. And because intercourse is often a central part of physical intimacy, couples may feel at a loss on filling the void. But there are others ways to be intimate. Couples can start by just holding hands, giving each other a massage, or cuddling on the couch while watching TV. In time, they can explore what makes them feel good. A sex therapist may also be able to help them find new ways to communicate and be intimate.

Keeping Depression at Bay
Depression is common among men with Peyronie’s disease. Fortunately, depression can be treated. Socializing with friends, staying active in the community, and keeping fit are all ways to alleviate depression.

However, Peyronie’s disease can be overwhelming. Some men are reluctant to seek professional help for depression, thinking it’s a sign of weakness. But a therapist, especially one that specializes in helping men with sexual dysfunction, can help a man handle the emotional difficulties of Peyronie’s disease.

Much is still unknown about the causes of Peyronie’s Disease. Research suggests it is a disorder of wound healing that occurs after some type of trauma to the penis. The classic example would be that of a patient who experiences a “misthrust” during sexual intercourse, where the penis slips out of the vagina and hits the partner’s pubic bone or perineum causing a bending of the penis. However, most men who develop Peyronie’s Disease do not recall any type of significant trauma like this. Instead, it is likely that most men experience some mild trauma (we call this “microtrauma”) to the penis during sexual activity. This goes unnoticed, but, in some cases, it may still trigger scar tissue formation.

Normally, wounds heal in three phases: First, enzymes clean the wound of dead or damaged tissue. Second, the body repairs the wound by forming a scar that strengthens the injured tissue. Finally, the collagen fibers that make up the scar are broken down and realigned leaving a smaller “remodeled” scar. In Peyronie’s Disease, not only is scar formation more “extreme,” but scar remodeling either fails to occur or is insufficient.

The abnormal scarring of Peyronie’s Disease is believed to be related to the processes that occur at the cellular level which stimulate the formation of scar tissue in the second phase of wound healing. During this process, excessive amounts of collagen, which is a type of protein, accumulate to create a plaque. Enzymes that normally regulate collagen production, and are responsible for remodeling scar tissue in the third phase of wound healing, may also play a role. Patients with Peyronie’s may produce too few of these enzymes or the enzymes they produce may not function properly to remodel the scar. To further complicate matters, in some men, part of the collagen in the plaque may be replaced by calcium.

Many investigators believe that men who develop Peyronie’s Disease have certain genetics (DNA or genetic material that is inherited from someone’s biological parents) that make it more likely to develop scar tissue in response to an injury to the penis. In other words, Peyronie’s Disease may actually be inherited. There is still a lot that we do not know about what causes Peyronie’s Disease, although current and future research projects are shedding new light on this condition.

Peyronie’s disease is treated by urologists - doctors who specialize in problems with the penis and related organs. But not all urologists are experienced in treating Peyronie’s disease. A man should feel comfortable with his urologist and confident that the physician has the necessary expertise. If there are any doubts, men should get a second opinion or change to a new urologist.

Sometimes, making that first appointment is the hardest step. A man with Peyronie’s disease may feel ashamed to admit he has a problem, especially with a part of his body that defines his masculinity. He may also feel nervous about treatment.

But taking that step has a number of benefits:

• Reassurance. A urologist experienced with Peyronie’s disease can put a man at ease, giving him the facts about the condition and what can be done about it. Having a specific action plan can make a man feel more in control of the situation.
• Referrals for counseling and sex therapy. Peyronie’s disease can take an emotional toll on men and their partners. Men may feel depressed because they can’t have sex the way they used to. They may feel anxious about future sexual activity. Both patients and their partners may start to withdraw from each other and communicate less. An experienced doctor can refer men and their partners to counseling, which can help resolve these issues. A sex therapist can also help the couple communicate about sex and suggest strategies for improving intimacy in the relationship.
• Individual guidance. A man’s urologist knows his specific situation and can answer questions on a more personal basis.
• Support. A urologist can recommend reliable books, articles, and websites with more information on Peyronie’s disease for men and their partners. They may also suggest support groups or online support communities where men and their partners can talk with others in similar situations.

Men planning their first appointment are encouraged to write down the details of their symptoms and any questions they may have. It’s also common to bring photographs of the erect penis taken from different angles. This helps the doctor see exactly what kind of curve and plaque formation are taking place. Sometimes partners need to take these pictures.

Some men choose to bring their partners to their appointments. Partners can provide support and be a “second set of ears” when the doctor explains the condition and treatment. Partners may also think of questions that haven’t occurred to the patient.

Peyronie’s Disease can often be diagnosed by a thorough medical history and physical examination. During the examination, the penis is carefully examined for a plaque which is very apparent in some men and quite subtle in others. Most experts agree that anyone who is interested in active treatment for their symptoms should probably undergo some additional testing. This is especially true for those who are considering more invasive approaches such as injections or surgery (see treatment section below). Some healthcare providers will rely on photographs that are taken by the patient at home. These are useful, but have some limitations. Another way to more fully evaluate your symptoms is to perform an “artificial erection” test in the clinic. During this test, a very small amount of medication (or mixture of medications) is injected into the penis through a small needle. The medication(s) work by telling the small blood vessels in the penis to open and bring more blood into the penis. This is similar to what happens in the penis with a sexually-induced erection. Once the penis is erect, the clinician can use special tools to accurately measure the direction and degree of curvature. The clinician can also evaluate for other changes to the shape of the penis such as indentation or “hourglass.” Think of this test as a way for the clinician to “see what you see at home.”

Another test that may be recommended is a penile ultrasound. This study uses sound waves which reflect off the tissue to create pictures. With the ultrasound we can actually visualize the scar tissue. The ultrasound may also be used to measure blood flow within the arteries in the penis, which can help to assess your erectile function. Other types of imaging tests such as x-rays, CT-scans, and MRIs are rarely useful, but may be recommended in certain circumstances.

Once your testing is complete, your treating clinician will be able to take all of the information that she or he has gathered, and together, you will come up with the most appropriate treatment plan.

Peyronie’s Disease is a benign, or non-cancerous, condition. This means that, if the symptoms are relatively mild or do not bother you, it is OK to simply observe. There have only been a few studies that have looked at what happens to men over time who decide not to pursue treatment during the first year or so after their symptoms start. One of the original studies from the 1970’s suggested that as many as half of all men with Peyronie’s Disease would see improvement with observation alone. Unfortunately, we now know that only about 5-15% of will actually see spontaneous symptom improvements. In contrast, up to half of men with Peyronie’s may see some worsening of their symptoms (particularly curvature and shortening of the penis) over the first year. Thankfully, things will eventually stabilize and, nearly always, the pain (if present) will get better or completely go away.

For those men who want to pursue treatment, it is important for the treating clinician to discuss the goals of treatment. Goals may include preventing things from getting worse, improving curvature, recovering some penile length, resolving pain, and ultimately making it easier to participate in sexual activity. It is usually not possible to restore the penis to what it was before the Peyronie’s Disease started. Each individual will have his own set of goals, and there is not a single right treatment for everyone.

Pills
Researchers have studied a number of oral therapies for PD, including: carnitine, colchicine, potassium aminobenzoate, tamoxifen, pentoxifylline, and vitamin E. These oral agents have been evaluated because of anti-oxidant or other properties which are thought to interfere with collagen synthesis and scar formation.

Unfortunately, most studies using oral PD therapies haven’t been well controlled. Since some PD cases improve on their own, and few studies of oral medication have compared treated patients to an untreated “control group,” it’s not clear if the oral therapies for PD offer any benefit over no treatment at all in terms of penile curvature, pain, or the ability to have intercourse.

As previously discussed, many men with Peyronie’s also have erectile dysfunction. Softer erections could cause the penis to buckle during sexual activity, resulting in further injury to the penis. It is important that men with Peyronie’s have strong erections to decrease the risk for injury. The initial treatment to promote stronger erections is often trying a pill such as sildenafil (Viagra) or tadalafil (Cialis), which helps improve blood flow to the penis.

Intralesional injection therapy
Several agents have been studied as intralesional injection therapies, meaning that they’re injected directly into the PD plaques. Some of the earliest drugs used in this way were steroids. Intralesional steroid injection are now discouraged in the treatment of PD because there are no clear benefits and potential risks for side effects.

Verapamil, a calcium channel blocker usually used to treat high blood pressure in the pill form, was initially proposed to stop collagen synthesis and increase collagenase activity, thereby promoting scar remodeling. Likewise, interferon injections have been proposed to improve PD through modulation of the immune system, induction of natural enzymes that break down collagen, and other mechanisms. And hyaluronic acid has been proposed and used in a select number of studies to treat PD. Among these three treatments, more recent comparative studies have suggested that interferon likely has the best overall outcomes. Until recently, these were the most common injectable medications used to treat Peyronie’s Disease.

In 2013, the United States Food and Drug Administration (FDA) approved the use of an injectable medication known as Collagenase Clostridium histolyticum (Xiaflex; Endo Pharmaceuticals, Dublin, Ireland). This is the first and only non-surgical FDA approved treatment for Peyronie’s Disease. Like other intralesional injections, the medication is injected directly into the scar tissue. It is a collagenase, meaning it breaks apart collagen. This treatment seems to work best when modeling or “bending” of the penis is performed, either by the treating clinician or by the patient at home. Collagenase is administered in the office over the course of about four to five months, with a total of 8 injections given during that time frame. In a large international trial carried out by many different physicians, men who received Xiaflex had a significantly greater improvements in their curvature compared with men who received a placebo (injection of salt water or “saline”). Some men, such as those with very mild or very severe curvature, as well as those whose penis curves downwards, may not qualify for collagenase. Tests such as the in-office erection assessment will help your treating clinician determine if this is the right treatment for you.

Topical therapy
Verapamil was introduced as a topical gel in the mid 1990s. It was hoped that the drug, which had been somewhat successful as an intralesional injection, could produce the same results with less discomfort in this noninvasive form. Unfortunately, when applied topically, the drug fails to reach the tunica albuginea. This was confirmed when men scheduled to undergo penile prosthesis surgery had verapamil gel applied to the penile shaft the night before and morning of surgery. During surgery, small tissue samples from each man’s tunica albuginea were removed and examined for verapamil. No verapamil was detected in any of the sampled tissue. In the past, some clinicians would use electrical energy with the hopes that this would increase the ability of the medication to penetrate the skin and make its way to the scar through something known as “iontophoresis.” While few studies have shown a potential mild benefit, current guidelines do not recommend this type of therapy for routine use. Similarly, pending further studies which demonstrate the ability of any topical system to penetrate a Peyronie’s plaque, topical therapies are generally not recommended to treat PD.

Shockwave therapy
Shockwave wave therapy has been tested as a means of breaking up PD plaques, promoting plaque resorption, improving blood flow to the penis, and straightening the penis. To date, no consistent improvements in penile curvature, plaque size, sexual function, or rigidity have been reported with this treatment in men with Peyronie’s Disease. However, shockwave therapy may help improve penile pain in some men and can be used in this setting. The current AUA guidelines on Peyronie’s Disease recommend against the use of shockwave therapy to improve penile curvature or the plaque associated with PD.

Penile traction
Penile traction refers to the use of a mechanical stretching device to gently pull on the non-erect penis. This gentle stretch, when exerted on the Peyronie’s Disease plaque, causes the body to remodel the scar tissue, thereby improving penile curvature for some men. Moreover, the stretching can also promote increases in erect and non-erect penile length. Studies looking at penile traction and Peyronie’s Disease were first published > 15 years ago, and several different traction device models are available. Some of the earliest reports found that men needed to use the device for 3-8 hours per day for many months to achieve benefits in length and/or curvature. More recent studies looking at a newer traction device suggest that men may be able to see significant improvements with only 30-90 minutes per day.

Traction is frequently used by itself as a treatment for Peyronie’s Disease, but may also be used in combination with other types of treatments such as intralesional injections and surgery to improve outcomes.

Surgery
Men who have had PD for at least six to twelve months, have not seen any recent worsening of their penile curvature, are unable to have satisfactory sexual intercourse, and whose PD is painless and stable may be candidates for PD surgery. Surgery is considered to be a “gold standard” for correcting penile curvature associated with PD, and surgical technique has improved tremendously over the past several decades.

No one type of surgery is right for all patients. If you can maintain a satisfactory erection (with or without medication), the curve in your penis is less than around 60 degrees, and your penis has neither an hourglass nor a hinge deformity, your doctor may recommend tunica albuginea plication/corporoplasty. When plication is performed, the tissue of the tunica albuginea on the opposite side of the plaque is plicated, or stitched, to counteract the bending effect. Some surgeons will offer plication for men with more severe curvature as well.

If your penis has more severe curvature, or if there is severe narrowing in your penile shaft so that it cannot become erect without buckling, then a more complex surgery may be considered. This is known as plaque incision/excision and grafting. During this surgery, the plaque itself is incised (cut into or partially excised) allowing the penis to straightened. The area where the plaque was cut is filled in with a graft, which is either composed of living tissue from another part of your body or harvested from human or animal tissue. There are several different types of grafts that surgeons use, and each has its pros and cons. Your surgeon will discuss this with you in more detail if indicated. This type of surgery has more risk for erectile dysfunction and sensation changes on the penis (numbness) compared with the plication, so it is not commonly performed for less severe conditions.

Placement of a penile prosthesis (penile implant) may be indicated for a man with Peyronie’s Disease and erectile dysfunction. During this surgery, cylinders are placed into the erectile body. These cylinders have the ability to expand with fluid to create a rigid erection that allows the man to have sexual activity similar to that of the natural erection. If necessary, the surgeon may also perform additional maneuvers to straighten the penis at the same time. For the man who suffers from erectile dysfunction and Peyronie’s Disease, this approach is associated with a high degree of satisfaction.

All PD surgeries carry potential risks, including incomplete straightening of the penis, erectile dysfunction, and diminished penile sensation. Before undergoing any type of PD surgery, be sure to discuss all risks thoroughly with your surgeon.

In most cases, surgical correction of PD successfully straightens the penis, but in the early phases of PD, other approaches such as traction or injections are often tried first. If you have signs and symptoms of PD, talk to your doctor about what treatment is best for you.

Neurogenic bladder

Normally the spinal cord communicates with the bladder to control urination. When the spinal cord is injured, it interrupts the signal between the brain and bladder. Neurogenic bladder is a term used to describe urinary issues in people who lack bladder control due to a brain, spinal cord, or nerve problem. It can result from a variety of conditions including a SCI, spina bifida, a stroke, multiple sclerosis, Parkinson’s, and Alzheimer’s disease.

Urinary and sexual function contribute to a person’s quality of life. Urinary function after SCI can have a significant impact on sexual function and satisfaction.  There are several different ways to manage neurogenic bladder depending on whether it’s a problem with storing urine in the bladder, or emptying it. Discuss the options with your healthcare provider to develop a plan that works well for you.

Condition overview written by Matthew J. Ziegelmann, MD