Content warning: This story contains mentions of suicide.
On February 3, Alphonse Williams, nephew of tennis players Venus and Serena Williams died by suicide at age 21, reported The Sun. Williams was diagnosed with several ailments including bipolar disorder and a recent diagnosis of the rare illness Peyronie’s disease, which causes the curvature of the penis.
Roughly half of all Peyronie’s suffers have depression, says a 2013 study in the American Journal of Managed Care.
“He had no idea that this thing was making him more depressed,” Sabrina Williams, estranged half-sister of Venus and Serena and the mother of Alphonse told The Sun. “When he got the news, he just couldn’t handle it, how many of us could have handled it at that age?”
For men with Peyronie’s disease—a condition that causes the penis to have an irregular curvature in the shaft—maintaining a great sex life is next-to-impossible.
Peyronie’s disease affects up to 0.5 percent of adult men and 8 to 10 percent of men around the age of 40 in the United States, but the typical age of onset is in the early 50s, says Culley C. Carson III, M.D., an investigator in the trial and a professor of urology at the University of North Carolina.
“I’ll often see patients who think they have some type of cancer, but really it’s just an undiagnosed case of Peyronie’s disease,” says Dr. Carson. (Concerned? We can help you answer the question Is Your Penis Normal?.)
And what’s more, between 65,000 and 120,000 guys are diagnosed with Peyronie’s disease every year in the United States, according to a report from Auxilium, the maker of Xiaflex.
But don’t worry just yet. Here are all the facts you need to know about the condition.
What causes Peyronie’s Disease?
Peyronie’s occurs due to a plaque that builds up in your penis, says Dr. Carson. It typically starts out as a localized inflammation, which then progresses to hardened scar tissue that reduces flexibility and causes your penis to bend during erection. “Peyronie’s disease can often result from an injury during sex,” Dr. Carson says. But realistically, anything that causes vascular trauma or injury to the penis, such as athletic activity or an accident, can receive the blame, he says.
How does Peyronie’s affect your penis?
Once the scar tissue begins to harden into a plaque, the tissue tethers the shaft into a curved position, because that section is no longer as elastic as the rest of the penis. “The curve can be anything from minimal up to almost 90 degrees,” says Dr. Carson. “The [penises] that usually need treatment have 30 degrees or more of curvature.”
What does Peyronie’s do to your sex life?
Things start getting painful when your penis becomes erect, making sex more difficult for you and your partner, says Dr. Carson. But the pain associated with an erection usually only lasts for the first 4 to 6 months. So most men can continue sex, but it’s just not as pleasurable, says Dr. Carson.
How to treat Peyronie’s disease
Unfortunately, there are no approved oral medications that actually work, Dr. Carson says. Patients are usually put on Potaba, a drug that reached the market before the FDA required proof of effectiveness. “When oral treatments don’t work, which they usually don’t, docs recommend Interferon, another injected treatment,” says Dr. Carson. But again, Interferon can’t guarantee a cure.
Case in point: One study, published in the journal EuropeanUrology, found that after treating 25 Peyronie’s partients with injections for five weeks, researchers saw a 28 percent decrease in the size of the plaque. Yet when the same researchers conducted the study 2 years later on a group of 30 men, no decrease in plaque size was reported.
If the docs exhaust every other option (and the case is extreme enough), surgery is a last resort. “There are three basic operations that we do: Two are based on just straightening the penis, and the third is a penile implant,” says Dr. Carson. But again, he pegs surgery at a 75 percent success rate, and each option may lead to erectile dysfunction and shortening of the penis.
