July 28, 2022 – Dennis Wallace’s journey through his treatment of a little-discussed male disorder began 5 years ago with a “Hmm” moment, followed by a little chat.
“I just started noticing a curvature in my penis when it was erect,” Wallace explains. He pointed to his wife, Lisa, who replied, “It looks good on me. Tidy up.” He did, in his body and in his mind. “I really didn’t think too much about it.”
While men have no reason to expect a straight erection, Wallace’s curvature quickly steepened to 45 degrees about 2 inches from the head. He quickly became unable to have sex. The plaque that had formed on the top of his penis was responsible for the curve.
Overall, he was shorter erect.
A clinician recommended a $1,200 tube of medicine that could break down plaque. He was asked to bend his penis against the curve. “You can hear a really loud cracking sound,” Wallace recalled, remembering his doctor. “I said, ‘Oh my God, really? “”
Wallace, a 60-year-old computer scientist in Dubuque, IA, had few decent treatment options but was diagnosed with Peyronie’s disease. The connective tissue disorder causes scar tissue to form on the tunica albuginea of the penis, a tube containing blood that expands during an erection. Scar tissue is thought to be the result of mild or major trauma to the organ during sexual or athletic activity.
Amy Pearlman, MD, assistant professor of urology at the University of Iowa, and the doctor who finally put Wallace on good treatment, compares the penis to a boxer who’s been “in a boxing ring for many years”. No one steps into a boxing ring without walking out with scars. And the scar tissue does not stretch.
The incidence of Peyronie’s varies, partly because men are too shy to discuss the problem. Pearlman says the rate varies between 0.5% and 20% of men. Wayne JG Hellstrom, MD, professor of urology at Tulane University School of Medicine in New Orleans, puts it at 4%.
Often the condition is painful. Men who have Peyronie’s tend to be middle-aged and have other conditions, including diabetes and erectile dysfunction — or both, in Wallace’s case.
Surgery, including a penile implant, has been a treatment option, as have stretching exercises and spring-loaded traction devices that bend the penis in the opposite direction of the curve.
Wallace rejected the option of surgery. “The first words that came out of my mouth were, ‘Nobody takes a knife there,'” he says.
The first FDA-approved non-surgical treatment for Peyronie’s, an injectable drug called Xiaflex, arrived in 2013. Xiaflex has become a go-to option for treating Peyronie’s in men whose penis bends 30 degrees or more.
Hellstrom, who helped develop Xiaflex, says studies have shown that 70% of men who receive the four-course treatment see improvement. Early studies found a 34% improvement – around 17 degrees – in penile curvature. For Pearlman, a goal is to “not be afraid to get an erection”.
Endo Pharmaceuticals, which markets Xiaflex, launched an advertising campaign last fall aimed at reigniting discussion about Peyronie. NFL viewers, a hot target demographic, got their first glimpse of the company’s “twisted carrot” ad urging those with the condition to “talk to a urologist about what your manhood might look like.”
Giggles ensued in some corners, with some critics saying they didn’t want to see such publicity during dinnertime. Justin Mattice, vice president and general manager of medical therapeutics at Endo, said the ad was a lighthearted way to address a serious topic.
Endo “spoke to men who have the disease, but did so in a way that would erase network television,” he says. “Bottom line, it works.”
Peyronie’s is “a very distressing condition for people,” says Pearlman. “No father talks to his son about curvature.”
Before receiving Xiaflex, Wallace says, he “felt really depressed. I thought there would be no solution to this. It’s kind of damaging to your mental health.
Wallace says the treatment – which insurance covered for him – was uncomfortable but not painful, although many patients experience pain.
“The next 3 or 4 days, your penis looks like an eggplant,” he says. “It’s completely black and blue and swollen.”
His curvature went from 45 degrees to a much more manageable 20 degrees. He still uses a penis pump and takes erectile dysfunction pills, but he says, “I feel like I have the libido of a 20-year-old again.”
man with a mission
Wallace has become an evangelist for Peyronie’s treatment, often via Facebook. At one point he came into contact with three men, two of whom were contemplating suicide. “It tore me apart,” he says.
Often a big obstacle is men who don’t want to discuss their problem.
“It’s very difficult to talk about it, and men are not good advocates for their health,” says Mattice. “The partner in a relationship is clearly a driving force in saying, ‘Things are not right. “”But “once they kind of get through that gauntlet, they’re almost relieved at the simplicity of the treatment.”
Hellstrom says he’s seen more patients as a result of the “twisted carrot” ad. “It’s extremely effective,” he says. “There is no reason to send patients home and wait and worry about that year. They should start treatment immediately.
Xiaflex is not available everywhere, so the treatment is not so simple. Allison Jenner from England has described her husband’s battle with erectile dysfunction, and Peyronie’s in particular, as grueling.
“The sexual contact became less and less, and he became more angry, and then gradually the anger gave way to depression,” she says. “We separated and lived as strangers. It was like living with a roommate, not a husband.
Jenner’s husband was successfully treated with a penis pump, the drug Cialis, and a constriction ring. Their sex life improved, but “he never discussed it with anyone”. Jenner has found people like Wallace extremely helpful in getting men to open up.
“Maybe it was just time to give back,” Wallace says.