Why Emotional Support Is Crucial With Peyronie’s Disease

Emotional support is vital for people diagnosed with a potentially serious health condition, but men with Peyronie’s disease (PD) often choose to suffer in silence, because they’re embarrassed. With the condition, scar tissue (also called plaque) causes an abnormal curvature of the penis.

With so much embarrassment and shame surrounding the condition, far too many men decline emotional support services, says John Mulhall, MD, director of the male sexual and reproductive medicine program at Memorial Sloan Kettering Cancer Center in New York City.

The potentially severe curvature of the penis can often be painful and make it difficult to have sexual intercourse, because of the pain, discomfort during sexual activity, or erectile dysfunction in some cases. The pain can be for both the person with Peyronie’s and their partner, adding to frustration in the relationship.

“At my hospital, Memorial Sloan Kettering, we tried to put together a support group for men with Peyronie’s disease, but we failed. No one showed up,” says Dr. Mulhall. “We could get men to come in and talk about erections, but we couldn’t get them to come in and talk about penile deformity.”

Peyronie’s can cause emotional distress. “It can be a traumatic experience for a man,” he adds. “There are about one-third of men who will say, ‘I’m not physically impaired, but I looked at it and I don’t even recognize it. It doesn’t look like my penis anymore.’”

As a urological surgeon with decades of experience treating PD, Mulhall has seen firsthand the emotional impact that comes with a diagnosis.

“I just saw a 17-year-old patient, and he’s looking at dealing with this condition from the very beginning of his sexual life,” he notes. “The one thing I’ve noticed that can trouble a man the most about the condition is the uncertainty — not knowing what is going to happen next.”

That uncertainty creates an additional mental health challenge for men who become consumed by the idea that they feel like less of a man because of the penile deformity. That’s why Mulhall’s patients receive three questionnaires: The first screens for depression, and the second is a psychosocial questionnaire about relationships. Only the third covers physical symptoms.

“If the depression questionnaire reveals that the patient is suffering from moderate-to-severe depression, they are referred to a psychologist immediately,” he explains. “At least one-third of men with Peyronie’s will have serious depression. However, even when you send them to a mental health professional, they may not even follow up and see that psychologist.”

If you are experiencing PD symptoms, Mulhall says the first thing you should do is find a urologist who has experience treating the condition.

“Generally speaking, mental health is absent from most urological care,” he says. “Most urologists are bad at treating Peyronie’s disease. Chances are, they haven’t treated many people with it, so they have limited experience, and they also don’t have the mental health or nursing staff to look after the patient.”

Mulhall’s practice, on the other hand, works directly with a psychologist. Once referred there, his patients can be assessed again to determine if more referrals and resources are needed, such as couples therapy.

By communicating with your partner, a urologist, and a mental health professional, you have a much better chance of being properly treated, restoring function to your penis, and eliminating the uncertainty that can cause depression and other issues. But if you have PD and aren’t getting the emotional support you need, it’s not your fault, Mulhall says.

“Men with PD have been largely underserved,” he explains. “There’s been virtually no money spent on research and studying what else could be done to benefit the patient.”

Here are some steps you can take if you need emotional support to deal with PD.

• Find the right provider. Urology Care Foundation has an online tool that allows you to search for local urologists by specialty. You can use keywords such as “sexual function” and “erectile dysfunction” in your search. Or, Mulhall recommends, if you notice symptoms of PD, ask a doctor you trust for a referral to a urologist with experience treating the condition. Make sure the urologist you choose can offer additional resources you may need for treatment, including referrals to a mental health professional.
• Talk to a mental health professional. Even if you’re already undergoing treatment for Peyronie’s, talk to a mental health professional who specializes in family relations and sexual issues. They can provide emotional support for dealing with the condition and any effects it may have on your sex life and relationships.
• Communicate with your partner. Be sure to talk to your partner regularly about how the two of you can maintain physical intimacy. Communication is a vital part of the process of treatment, Mulhall says. “To be honest, most of the couples I see relating to Peyronie’s disease don’t need couples therapy,” he notes. “However, some men with PD become avoidant of sexual activity, so they are perceived by their partners as having a low sex drive and disinterest. That results in a buildup of resentment, and then the partner withdraws. Then they both get into a spiral.”

• Peyronie’s disease is a potentially serious condition that can result in curvature of the penis and cause physical pain and discomfort. It can also take an emotional toll because of its impact on self-image.
• It is believed that many men who have PD do not seek medical or mental help because of being embarrassed by the condition. There are several nonsurgical options available to improve Peyronie’s.
• Peyronie’s can also have an impact on your partner, as it can cause pain for both of you, adding strain to the relationship.
• Communicating with your urologist and a mental health provider will help you get the best care, restore function to your penis, and deal with the emotional toll of the disease.