WEDNESDAY, May 8 (HealthDay News) -- Some diseases are
especially tough to discuss.
When Tony Lee realized that his penis was curving whenever he
had an erection -- making it painful and difficult for him to have
sex -- he had no idea what was wrong. He became depressed and very
worried, and his relationship with his wife started to change.
"For a man to dread sex, it's just not natural," he said. "There were times when I would stay up late on purpose, just to make sure my wife was sleeping before I got into bed. I was just totally embarrassed."
His wife finally convinced him to see his primary care
physician, who referred him to a urologist. The specialist told him
he had Peyronie's disease, a connective tissue disorder involving
the growth of fibrous collagen plaques in the soft tissue of the
penis. The condition can cause pain, erectile dysfunction and
shortening of the penis.
The diagnosis was difficult to face.
"You do freak out. It's such a personal area. It's like, 'Noooooo! Why couldn't I just lose a finger? Anything but this,'" said Lee, who is 46. Lee asked that his full name not be used.
Experts estimate Peyronie's disease, a connective tissue
disorder, affects at least 5 percent of men. Although the cause of
the disorder is not known, physicians think genetic predisposition
and repetitive minor trauma to the penis during sexual activity may
play a role. People with diabetes, and those who have had prostate
cancer surgery or erectile dysfunction, are also susceptible to the
disease, according to Dr. Larry Lipshultz, a professor of urology
at Baylor College of Medicine.
The treatment options are very limited, and there is no cure.
"There is no oral or topical medication," said Dr. Elizabeth
Kavaler, a urologist at Lenox Hill Hospital, in New York City. "You
can excise the plaque and tighten up the other side, but that
reduces the length, or you can use a penile prosthesis."
Lipshultz said he's had some luck with about half of his
patients when he gives them a drug called verapamil, a calcium
channel blocker, which is injected into the shaft of the penis. The
use of the drug is based on its ability to degrade collagen,
slowing, preventing or even reversing plaque formation and the
progression of Peyronie's disease, according to a 2002 study
published in the
International Journal of Impotence Research. A verapamil gel
that is applied to the skin is also sometimes used, according to
Lee, who has been dealing with Peyronie's for about two years,
has used a "straightening machine" that stretches the penis, and he
participated in one of two clinical trials for a new drug that is
up for review by the U.S. Food and Drug Administration: Xiaflex,
produced by Auxilium Pharmaceuticals Inc. He said his penis is now
70 percent of its pre-disease length as a result of the
Xiaflex, which breaks down the scar tissue that is a component
of penile plaque, was approved by the FDA in 2010 to treat
Dupuytren's contracture, an inherited connective tissue disorder
that causes the fingers to bend toward the palm. The concept of
using Xiaflex with Peyronie's is based on some common features of
both diseases. The hand condition is caused by an abnormal buildup
of a substance called collagen. Fingers begin to bend toward the
palm and the patient cannot straighten them.
The two clinical trials designed to test how Xiaflex worked in
people with Peyronie's disease -- done in 2011 and 2012 -- together
involved a total of 551 patients who received Xiaflex and 281 who
were given a placebo. Each participant received four to six
injections with a small needle into the penis every 25 to 72 hours
over a period of several weeks. "The results showed people got a 30
percent improvement in curvature, which is clinically significant
in terms of function," Lipshultz said
Recent data on the treatment appeared online in February and
will be published in the July print issue of the
Journal of Urology.
Lipshultz, who was involved in the clinical trials and is paid
by Auxilium to speak to physicians about the treatment, said the
company thinks Xiaflex will be approved by the FDA by
Yet, Kavaler expressed concerns about whether Xiaflex will be
"The data show it looks like the drug made people feel better about their condition, maybe because they were getting treatment in the clinical trial, but I'm not sure if functionally it made a big difference," she said. "I don't think I could convince somebody to let me inject their penis four to six times with the hope of getting some small improvement."
Side effects from the injection of the drug included: bruising,
swelling and pain. There were also three serious adverse events
involving penile fracture and three hematomas, according to
But Lee is hopeful.
"I was so far gone with this, the curvature was so bad, and so I feel a whole lot better about myself now," he said. "It's kind of like if a person was paralyzed, and then all of a sudden you can walk, even though you might need assistance, it's a wonderful thing. That's how I'm looking at it."
Lee encouraged people to involve their partners to help them
deal with the disease. "If there is a significant other in your
life, you guys need to come together with this. For me, that made
all the difference."
Learn more about Peyronie's disease from the
U.S. National Library of Medicine.
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