Why Peyronie’s Disease Goes Undiagnosed and Untreated
Health & Patients
It can be hard to talk about sensitive healthcare topics, especially when they may impact parts of our bodies we shy away from discussing publicly, and even privately. Such is the case for men suffering from Peyronie's disease (PD), a medical condition that involves a buildup of fibrous scar tissue under the skin of the penis that can cause curved and sometimes painful erections. Men experiencing PD may avoid intimacy, and for many, having PD causes stress, anxiety, and even depression, but sufferers often do not seek help.
Prevalence, Symptoms, and Causes
It is estimated that approximately one in 10 men has PD in the U.S., and it could be even more, as there is thought to be a great deal of under-reporting. Men with PD may complain of a variety of symptoms. Penile curvature, lumps in the penis, painful erections, soft erections, and difficulty with penile penetration due to curvature are common concerns that bring men with PD to see their doctors.
The cause of PD is not always clear. One of the most likely causes is an injury or series of injuries to the penis, which may even go unrecognized by the patient, that build up over time. However, not all patients have experienced an injury, so there may be genetic or environmental factors that have yet to be fully understood.
How to Get Help—One Patient’s Advice
In a small percentage of men, PD goes away on its own, but in most cases, it will remain stable or worsen over time. Treatment might be needed if the curvature is associated with significant bother or severe enough that it prevents successful sexual intercourse. There are both surgical and nonsurgical treatments for PD, but a patient must first begin a conversation with a specialized urologist who can provide appropriate options and help develop a treatment plan.
One PD patient, Del, who successfully sought treatment encourages men to take the first step, even if they feel uncomfortable about it. He notes, “If you’re like me and you think you might have Peyronie’s disease, you’re not alone. There are lots of other men in the world that are having this issue. Find a urologist that you're comfortable with and who’s experienced. And if they do diagnose you, take the time to understand your options and go ahead—it’s worth your patience.”
Hear more from Del and his partner Melissa here.
For more information on PD, including common symptoms and nonsurgical treatment options, and to find a specialized urologist, visit these resources:
- Endo’s Ask About the Curve: www.talkaboutpd.com
- Men’s Health Network: menshealthnetwork.org/peyronies-disease
- Sexual Medicine Society of North America: smsna.org/patients
References:
DiBenedetti DB, Nguyen D, Zografos L, Ziemiecki R, Zhou X. A population-based study of Peyronie's disease: prevalence and treatment patterns in the United States. Adv Urol. 2011;2011:282503.
Hellstrom WJG. Medical management of Peyronie's disease. J Androl. 2009;30(4):397-405.
Stuntz M, Perlaky A, des Vignes F, Kyriakides T, Glass D. The prevalence of Peyronie's disease in the United States: a population-based study. PLoS One. 2016;11(2):e0150157.
What is Peyronie's disease? Urology Care Foundation. Accessed April 11, 2024. https://www.urologyhealth.org/urology-a-z/p/peyronies-disease
