Peyronie’s Disease will affect 8-10% of men in their lifetimes, and by many accounts, that number is both underreported and increasing. Compare this to the 11% of men who will be diagnosed with prostate cancer in their lifetimes, or the 5-15% of men between 40 and 70 diagnosed with ED.

This raises the question: why is Peyronie’s Disease unfamiliar to the general public when it afflicts a similar range of men as these other diagnoses?

What is Peyronie’s?

For those not aware, Peyronie’s Disease is a disorder where scar tissue forms inside the soft tissue of the penis. This often causes penile pain and misshaping, and in some cases, erectile dysfunction, loss of girth / length and a severe curvature or deformity that prevents intercourse. It’s typically caused by trauma to the penis, such as sex (any kind of sex), athletic injuries, bending, or hitting.  I like to describe to my patients the process where some penises respond to inflammation worse than others.  Significant trauma, like a fracture of the penis, will cause a “Peyronie’s-like” plaque on anyone.  Others may develop severe curvature with Masters and Johnsonian  like sex:  5 minutes and missionary only.

Awareness of Peyronie’s

One of the most obvious reasons for the lack of awareness of Peyronie’s is the relative ineffectiveness of oral medications – while the current prescription treatments on the market perform better than placebos and may work for mild cases, surgery is the most effective approach to fully treat the disease and achieve a positive patient outcome.

Erectile dysfunction, on the other hand, while not unheard of, definitely gained more awareness and acceptance with the advent of prescription drugs to more effectively treat it, along with a massive publicity push by pharmaceutical companies. The sheer frequency of advertisements in popular media for ED treatment has more or less pushed it in the mainstream over the past few decades, and has proven to be extremely profitable for their manufacturers.

Prostate cancer has also received more publicity than Peyronie’s Disease, but with good reason: neglecting to get checked for it could result in death. There has been a concerted effort on the parts of medical professions, non-profit organizations, health insurance companies and others to “get the word out” for men past a certain age to regular check-ups of their prostates (and colons) to check for potential signs of cancer.

While Peyronie’s Disease is a serious diagnosis and can represent a major decline in life satisfaction for men, it doesn’t represent a preventable fatal outcome, and as such hasn’t gotten as much in the way of public awareness campaigns.

The Less Obvious Reason

There’s another reason that may not be initially apparent for the lack of awareness of Peyronie’s Disease, one that is related to one of the more common factors which may lead to it: an active and vigorous sex life.

For many men, their sex lives are a large part of their identities and their relationships. Admitting a sexual problem to a partner or spouse can be difficult, especially if it’s following a longer pattern of physically vigorous activity with one another.

This reticence to discuss concerns about one’s penis can exacerbate the symptoms of Peyronie’s Disease: as it typically presents as penile pain before curvature or deformity, some may choose to ignore their symptoms and try to continue with their current level of activity, unaware that the continuing trauma is causing more scar tissue to form.

If talking frankly about sexual dysfunction is difficult for men, the appearance of lumps, an hourglass shape, or a severe curvature of the penis is even more so (I have seen penises that look like something out of an Dr. Seuss illustration).  Thus, Peyronie’s Disease is very likely underreported, often untreated, and simply not talked about, leaving men to suffer privately.

What Can Be Done?

As with many other urology-related issues, helping to overcome the initial awkwardness of seeking help is key. Men should be willing to take responsibility for their health, especially if they’re suffering physically and emotionally, as well as to share their experiences on online forums or with friends and family who may be experiencing similar symptoms. Men’s partners should be willing to provide support and to speak frankly when they think medical treatment is a good idea.  Quite frankly, I am sick of the recent pill-peddler commercials that suggest that using their services can help one avoid these difficult conversations.  Shout from the mountain top about your penis because, Oh! the places you will go!

The good news is that surgical treatment of Peyronie’s Disease is effective, and when used in tandem with a penile implant, can restore sexual function to patients, even those displaying severe indications. Seek medical treatment before symptoms worse, and support the efforts of websites like the Association of Peyronie’s Disease Advocates to help educate the general public about it.

Awareness of Peyronie’s is the first step in treating it.