Sometimes it takes the licensing and advertising of a treatment to get patients to seek help, even for a medical problem that is often painful and psychologically devastating.
Such is the case with Peyronie’s disease, a scarring and bending or curving of the penis that can make sexual intercourse difficult or impossible for both straight and gay men. It most often afflicts middle-aged men, usually the result of an injury that may not have been noticed. Injury can occur during a sports activity, accident or vigorous sex when the erect penis is bent or pounded against bone.
In repairing the damage, the body creates plaques of scar tissue under the skin of the penis, causing it to bend or curve abnormally or become indented when erect. Before the end of 2014, when the Food and Drug Administration approved an injectable drug called Xiaflex, there was no approved treatment for Peyronie’s. Xiaflex contains an enzyme, collagenase, that in four cycles of treatment is injected directly into the plaque to destroy it and reduce the curvature.
One off-label remedy — multiple injections into the penile plaque of the blood pressure drug verapamil — is said to work in up to 40 percent of cases, though this has not been proved in a controlled trial.
One happy beneficiary of verapamil, Don Cummings, a 56-year-old playwright living in Los Angeles, has written a memoir about his experience, “Bent But Not Broken,” in hopes of encouraging other men similarly afflicted to seek professional help, especially now that Xiaflex is available.
“I know that men don’t talk about this, and I wanted other guys know they can get better,” Mr. Cummings said when I asked why he wrote such a revealing book. “I’m back to 95 percent of what was normal for me before Peyronie’s.”
Researchers estimate that anywhere from 1 percent to 23 percent of men between the ages of 40 and 70 are affected, although the actual number may be higher given that embarrassment keeps many men from seeing medical help. More than three-fourths of those affected are depressed and stressed by the problem.
“For the most part, men suffer in silence,” Dr. Jesse N. Mills, director of the Men’s Clinic at the University of California, Los Angeles, said in an interview. Given his urological specialty, Dr. Mills said he sees about 20 new patients a week with Peyronie’s, many of whom seek help after seeing ads for Xiaflex online.
“I don’t think the incidence has changed in the last 500 years, but more men are realizing there may be an effective treatment, though we still lack a celebrity patient who will do for Peyronie’s what Bob Dole did for erectile dysfunction,” the urologist said.
The penis consists of three tubes: the hollow urethra that carries urine and semen, and two soft, spongy tubes called the corpora cavernosa that fill with blood to stiffen the penis in an erection. All three are encased in a tough, fibrous sheath called the tunica albuginea that, when plaque forms, makes the sheath less flexible. Depending on the location of the plaque (in 70 percent of cases, it forms on the top side of the penis), it can cause the penis to bend up, down or to the side when it stiffens. Sometimes plaque forms around the penis, creating a narrow band like the neck of a bottle.
Heredity and certain connective tissue disorders like Dupuytren’s contractures increase the risk of developing Peyronie’s. Elevated blood sugar, smoking and pelvic trauma also increase the risk. The disease can develop gradually or come on suddenly. It occurs in two phases: acute and chronic. The acute phase, which often causes painful erections, lasts for six to 18 months, during which plaque forms and deformity of the erect penis worsens. In the chronic phase, the pain ends, the plaque stops growing and the deformity stabilizes.
Mr. Cummings’s doctor told him it was good that he came for treatment early, before the plaque became calcified and harder to treat. As he described it, the many injections of verapamil put holes in the plaque, “changing it from Cheddar to Swiss” and making the penis more flexible. He also spent hours a day stretching his penis with a traction device called Andropenis, an F.D.A.-approved penile extender.
This and similar devices can help lengthen a penis shortened by Peyronie’s and foster straighter remodeling as the plaque is replaced with healthy collagen.
“Xiaflex is not a miracle drug,” Dr. Mills said. “The trial that led to F.D.A. approval saw a 35 percent improvement in curvature, although we’re seeing about a 50 percent decrease. I tell patients ‘You’re never going to get back the penis you had, but you can get a functional penis,’ which is what most men want.” Only rarely does the problem correct itself without treatment.
Severe cases that don’t respond adequately to injections may be treated surgically, an option usually reserved for men with disabling deformities that make sexual activity difficult. Surgery is not done until the plaque and curvature have stabilized. Options include shortening the side of the penis opposite the curve or extending the curved side by filling in with a graft, a more challenging approach.
Some men with Peyronie’s disease who also have erectile dysfunction may be fitted with an inflatable pump or malleable silicone rods that straighten the penis and make it stiff enough for penetration.
As with all sexual problems, it helps tremendously to have an understanding and patient partner. Mr. Cummings said he was fortunate to have been in a loving 16-year relationship with his boyfriend, Adam, when Peyronie’s surfaced. Though the sailing wasn’t always smooth, he and Adam married as he neared the end of treatment.
Mr. Cummings said several women have told him that their husbands have the problem but won’t do anything about it. “Some doctors tell guys that there’s nothing that can be done about this. Men should know there is help out there — this is not something to be ashamed of,” he said.
Dr. Mills emphasized that although there is still no sure cure for Peyronie’s disease, therapy often lessens the problem. “Xiaflex is the best treatment we have, and it got only a B rating from the American Urological Association,” he said.
Although insurance coverage has long been hard to come by, most health insurers, including Medicare, now cover Xiaflex treatment for men with curvatures greater than 30 degrees. If your insurer denies coverage for Peyronie’s treatment, especially if the disease impairs sexual function, ask your doctor to file an appeal.