Living with Peyronie’s Disease: Personal Stories and Coping Strategies

When John first noticed a slight curve in his penis during erection, he dismissed it as nothing serious. “I thought it was just one of those things that happens as you get older,” he recalls. But as the curve worsened and sex became increasingly painful, he could no longer ignore it. After months of anxiety and avoiding intimacy with his wife of 15 years, John finally saw a urologist and received his diagnosis: Peyronie’s disease.

John’s story is far from unique. Peyronie’s disease—a condition characterized by fibrous scar tissue that forms beneath the skin of the penis, causing curved, painful erections—affects approximately 1 in 10 men. Yet despite its prevalence, it remains shrouded in silence, with many men suffering physical and emotional pain behind closed doors.

In this article, we share real stories from men living with Peyronie’s disease and offer practical coping strategies that have helped them navigate this challenging condition.

The Emotional Toll: More Than Just Physical Pain

According to research published by Endo Pharmaceuticals, approximately 48% of patients with Peyronie’s disease experience depression, and 54% report interpersonal relationship problems. These statistics highlight what many men with the condition already know: Peyronie’s disease impacts far more than just physical intimacy.

Michael’s Story: Confronting Depression

Michael, 52, was diagnosed with Peyronie’s disease three years ago after noticing a 45-degree curve and experiencing significant pain during erections.

“The physical symptoms were difficult, but the depression hit me harder than I expected,” he shares. “I withdrew from my partner, stopped going to social events, and spent most evenings alone, consumed by worry. I couldn’t stop thinking about whether I’d ever have a normal sex life again.”

Michael’s experience reflects what researchers at the American Urological Association have found—Peyronie’s disease has a significant negative impact on mental health, affecting everything from self-image to intimate relationships.

David’s Story: Relationship Challenges

For David, 47, the hardest part was talking to his wife about his condition.

“I was diagnosed six months into a new relationship,” he explains. “I was terrified she would leave me. For weeks, I made excuses to avoid sex, which only created more tension between us. When I finally told her, I was surprised by her response. She was hurt that I hadn’t trusted her enough to share what I was going through sooner.”

As Everyday Health points out, Peyronie’s disease can lower the quality of romantic relationships and decrease sexual desire, but open communication is often the first step toward managing these challenges together.

Coping Strategies That Work

While each man’s experience with Peyronie’s disease is unique, certain strategies have helped many navigate both the physical and emotional aspects of the condition.

1. Educate Yourself and Your Partner

Knowledge is power when it comes to managing Peyronie’s disease. Understanding the condition—its causes, progression, and treatment options—can help reduce anxiety and empower you to make informed decisions about your care.

Robert, 61, found that researching the condition helped him feel more in control: “Learning that the disease has two phases and that the pain usually improves after the first year gave me hope. It wasn’t just going to get worse forever.”

Resources for education:

• American Urological Association’s patient resources
• Association of Peyronie’s Disease Advocates
• Books like “Coping With Peyronie’s Disease” by Theodore Baroody

2. Find the Right Medical Support

Many men report seeing multiple doctors before finding one who took their condition seriously. Finding a urologist who specializes in men’s sexual health can make a significant difference in your treatment experience.

James, 55, saw three different doctors before finding the right specialist: “The first doctor told me to ‘just live with it.’ The second prescribed medication without really explaining how it worked. The third—a urologist specializing in men’s sexual health—spent an hour with me discussing all my options and developing a treatment plan tailored to my specific case.”

According to HE Clinics, regular check-ups with a knowledgeable healthcare provider are essential for monitoring the condition and adjusting treatment plans as needed.

3. Explore Treatment Options

From non-invasive approaches to surgical interventions, various treatment options exist for Peyronie’s disease. What works best depends on the severity of your condition, how long you’ve had it, and your overall health.

Non-surgical treatments that men in our interviews found helpful include:

• Traction therapy: Thomas, 49, saw a 20-degree reduction in curvature after six months of consistent traction therapy. “It requires dedication—wearing the device for several hours daily—but the improvement was worth it.”
• Injection therapy: “The collagenase injections were uncomfortable,” admits Carlos, 58, “but they reduced my curvature from 60 to 35 degrees, which made intercourse possible again.”
• Oral medications: While less effective for severe cases, some men report improvements with certain oral medications, particularly during the early (acute) phase of the disease.

4. Join a Support Group

Perhaps one of the most powerful coping strategies is connecting with others who understand what you’re going through.

“The online support group I joined changed everything for me,” says William, 63. “For months, I thought I was the only one dealing with this. Hearing other men’s stories—their struggles and successes—made me feel less alone and gave me hope that things could get better.”

Support groups provide not just emotional comfort but practical advice from those who have tried different treatments and coping strategies.

Where to find support:

• Men’s Health Network
• Peyronie’s Disease Forum
• Facebook groups dedicated to Peyronie’s disease support

5. Communicate Openly with Your Partner

For men in relationships, maintaining open communication with partners is crucial. As Dr. Shridharani notes on his website, many men struggle with Peyronie’s disease in silence due to embarrassment, but addressing the condition together with a partner can lead to better outcomes.

Alan, 50, found that scheduling regular “check-ins” with his wife helped maintain their connection during treatment: “We set aside time every Sunday evening to talk about how we were both feeling—not just about the physical aspects but the emotional ones too. It kept us connected during a time when it would have been easy to drift apart.”

6. Explore Alternative Forms of Intimacy

Many couples affected by Peyronie’s disease discover that expanding their definition of intimacy helps maintain connection during treatment.

“My wife and I had to get creative,” shares Miguel, 56. “We focused more on other forms of physical intimacy and connection. In some ways, it actually improved our relationship because we had to communicate more explicitly about what felt good.”

7. Address Mental Health Proactively

Given the high rates of depression among men with Peyronie’s disease, proactively addressing mental health is essential.

Peter, 59, initially resisted therapy but now credits it with helping him cope: “As a man who never thought he’d need therapy, I was surprised by how much it helped. My therapist helped me work through feelings of inadequacy and gave me tools to manage anxiety about intimacy.”

Consider:

• Individual therapy with a psychologist familiar with chronic health conditions
• Couples counseling to navigate relationship challenges
• Mindfulness and stress reduction techniques
• In some cases, medication for depression or anxiety

Finding Hope and Moving Forward

While Peyronie’s disease presents significant challenges, many men find that with proper treatment and support, they can return to satisfying, intimate relationships.

“Three years after my diagnosis, I’m in a better place than I ever expected to be,” says Richard, 54. “The curve is still there, but it’s less pronounced, and I’ve learned to work with it rather than against it. My relationship with my partner is stronger because we faced this together.”

Dr. Laurence Levine, a urologist specializing in Peyronie’s disease, emphasizes that “with today’s treatment options and greater awareness, most men with Peyronie’s disease can expect significant improvement in both physical symptoms and quality of life.”

Breaking the Silence

Perhaps the most important step in improving outcomes for men with Peyronie’s disease is breaking the silence surrounding the condition. By sharing stories and speaking openly about both the challenges and the available solutions, we can reduce stigma and encourage more men to seek the help they need.

If you’re living with Peyronie’s disease, remember that you’re not alone. Thousands of men are navigating the same challenges, and many have found ways to overcome them. With the right support, treatment, and coping strategies, you too can find a path forward.

Have you or someone you know experienced Peyronie’s disease? What coping strategies have you found helpful? Share your experiences in the comments below to help others on their journey.