For a condition that affects an estimated 1-23% of penis owners ages 40-70, Peyronie’s disease is only beginning to receive the attention it deserves. And while it often goes unaddressed, symptoms are virtually impossible to ignore.
For Don Cummings, author of the memoir "Bent But Not Broken," symptoms began at age 48, with afflictive nighttime erections.
“I thought something odd was going on, but I ignored it at first, figuring it would go away,” he said. “Then, a few weeks in, when I became erect, I saw that my penis was bending to the right, at the distal end, just below the glans, about 20 degrees. Erections and sex became painful.”
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The bent and painful erections that characterize Peyronie’s disease happen when scar tissue known as plaque builds up in the tunica albuginea. This stretchy, thick membrane helps trap blood in the penis during arousal, making erections possible. The plaque usually gathers at the top or bottom of the penis, causing the bend and irritation. In some cases, symptoms make anal and vaginal intercourse impossible.
While Peyronie’s disease itself isn’t contagious, its effects inevitably affect partners of people who have it. For a while, Cummings’ symptoms slowed his sex life down nearly to a halt.
“I could not insert my penis into where it needed to be inserted,” he said. “So oral sex and hands became the preferred way to go. Then, as things got worse, I couldn't really bear to have my partner touch my penis. We would have sex, but to reach orgasm I would simply take care of that myself.”
Read: Got a Penis? Here's How to Have Sex Without It
Thankfully, early treatment has gone a long way for Cummings. Unlike vulva and vaginal sexual pain, which too often goes disbelieved, undiagnosed and untreated, the effects of Peyronie’s disease tend to be quite visible, taken seriously and easily diagnosed through tests and exams that assess plaque levels.
After Cummings was diagnosed, he underwent six treatments, spaced two weeks apart, involving injections of an off-label blood pressure medication and saline to address the plaque. Other available treatments include the prescription medication Xiaflex, a shock wave treatment called GAINSWave, dietary supplements and surgery.
Cummings also used a “penis stretcher,” an Andropenis traction device, for 4-6 hours daily at home. From there, he said, things improved then worsened then improved again. All in all, it took about 18 months, from discovering the disease to the end of his treatment.
The toughest part of Peyronie’s disease, Cummings recalls, was the impact it had on his relationship with his partner, Adam. It was “the straw that broke,” he said, bundling it up with other emotional issues they’d yet to resolve and creating rifts to the point of near-breakup.
“I felt like I truly did not want to be on earth for too long if my penis would cease to be something I could enjoy,” he said. And while these feelings weren’t constant and he wasn’t suicidal, he often felt as though he was going to “slowly slide, decade by decade, into a welcomed senescence.”
Even so, his journey with the disease ended up benefiting his emotional well-being and relationship, proving that vulnerability and hardships can really set the stage for growth and progress.
“I learned some acceptance about life, the body, to not be so attached to anything,” he said. “This took some struggling. But because I am basically an optimistic person, I had to become active in my focus.”
Cummings also had to stand up for himself within his relationship by stating his truth and needs, he said, which ended up strengthening his bond with Adam. As a result, in October of 2011, he and Adam were married.
What To Do If You Have Symptoms
If you or a partner is enduring symptoms of Peyronie’s disease, you can find your way back to less pain and more pleasure.
First, seek proper diagnosis and treatment from a qualified expert, such as a well-respected urologist. The sooner you do so, the better, to prevent more plaque buildup and angst.
If shortened erection length is interfering with your sexual life or confidence, know that treatment is available for that specifically.
“Men can realistically lose 1-2 inches of their penile length,” said California-based urologist Dr. Judson Brandeis of the emotional impact of Peyronie’s. “For better or for worse, much of a sexual man's self-confidence is bound up in the length of his penis, and when that is compromised, it can have devastating effects on his sexual self-worth.”
Brandeis suggests seeking a GAINSWave provider, not only for pain relief but for length issues. Unlike Xiaflex and surgery, he added, this shock wave treatment can potentially restore full erection length.
Regardless of your treatment plan, consider support from a clinical sex and relationship therapist. The right person can help you better manage the emotional toll of your symptoms, the stress of it all and any relationship issues, whether you seek it alone or with a partner.
For milder cases or if your penis stays slightly curved after treatment, consider the potential perks. A little creativity and exploration could lead to mega pleasure.
“If the curvature allows [for] penetration, it is possible that it could work to the advantage of the couple by stimulating the vaginal walls more directly,” said Dr. Anika Ackerman, a urologist in New Jersey. “If the curvature is upward, it would allow for direct penetration of the female G-spot in a missionary sex position.”
Throughout treatment, or if it doesn’t restore the penis function you were used to , remember that there are countless ways to give and experience sensual pleasure that don’t involve penetration or particular penis shape, angle or size. You can rely on your fingers, mouth, sex toys and mind.
“Very important, too, is to discover all the other parts of your body that are sexually wonderful,” Cummings said. “Your testicles, nipples, prostrate, anus, knees, elbows, inner things, ears and mouth. Your hair. Your feet. Whatever feels good. I mean, look - at 90 years old, chances are one's penis will not be super robust. Practice for when you are 90! Keep your whole body alive and healthy and feeling as much pleasure as it can. Within reason.”
