Creating a safe space to talk about erectile dysfunction and penile implants

To say I was surprised to hear my diagnosis of prostate cancer (PCa) at 46 years old, was a slight understatement. I was married with two kids, I was busy with a demanding job, I had a full life, and dealing with prostate cancer was not part of my life’s plan. My shock was compounded by my father’s death from prostate cancer the day after my diagnosis. This bump in the road of life was in danger of turning into a roadblock!

Fast forward to post-surgery and things were still not going so well. The surgery was successful; I was going to be fine; I was cured. Strangely, I never doubted that for an instant. But the side effects from surgery, particularly the sexual side effects, were definitely not ideal. I was confused and frankly, a bit lost. My surgeon told me to be patient – but that was easy for him to say. His life was not on hold.

My first reaction was to turn to the internet. In my PCa journey, the internet had been a huge help. There are dozens of websites with forums to talk to men about their cancer experience. I was able to talk to other patients, many of whom shared treatments even as they were unfolding. When it came to sexual dysfunction, however, it was a different story. The internet was a vast sexual-help wasteland full of conmen and scammers selling pills, potions, powders, and pumps. When it comes to male sexual function, the internet was NOT a safe space!

Around the same time, I was part of a study for a new PDE5 inhibitor at the hospital in New York where I had my prostate removal surgery. The urologist running this study asked me a lot of questions and then ended up giving me some pretty good advice. He told me sexual function issues affect millions of men and goes far beyond PCa guys. He explained the prevalence and variety of men’s sexual health challenges – he said one third of men in America struggle with some sexual function problem. He encouraged me to expand the mission of Franktalk to all of them. I took his suggestion and turned Franktalk.org into a site where individuals with erectile dysfunction could come for support.

Men joined Franktalk.org by the hundreds to share in an open, honest, and vulnerable manner about their treatments, fears, frustrations, and treatment experiences. We soon had people from all over the world sharing their stories. This was not, and is not, a place for medical advice. It’s just men offering each other support, encouragement, hope, and even some tips and tricks to help treatments work and restore their sex lives.

At first, the visitors were asking me for help, but I didn’t know much more than they did! So, I began to seek out experts to pass along the questions. As a former teacher, one skill I had was an ability to break down the medical information into accessible pieces to teach men. I was also tenacious enough to keep asking questions until I got a satisfactory answer! My life was about to take a major turn. I finally decided to become a sex therapist because the crisis for so many men was not just the medical reality they were now facing, but the new sexual functioning reality they needed to adjust to. I began to focus on how changes in sexual function affected them and their relationships. My goal is to help men embrace their new reality and experience rewarding sex lives—even if their sexual function no longer resembled that of their youth.

My message to men is: Medical science can get you an erection, don’t give up! Take time to educate yourself about treatment options. Don’t wait to see if things improve. Don’t put your life on hold. Find a sexual medicine specialist and understand your options. Talk to others who are experiencing the same thing. Learn everything you can.

I became a sex therapist to help men understand and integrate the medical treatments into their sex lives. While sex is not about an erection, we certainly want it on the menu.

Understanding how we have been taught to have sex in a rigid, intercourse-based, performative manner has not been helpful to most of us. Learning to give and receive pleasure, learning to communicate through touch, and learning to break out of the masculine stereotypes of how we have sex is crucial to improving our sex lives. Erections can be a pathway to pleasure; they are not the focus.

Creating Franktalk changed my life and allowed me to change other men’s lives. The site is fully committed to patient education as the best way to help patients. An educated patient becomes an equal partner in their health care decisions. We receive grateful emails from users who have found hope and help, fulfilling our mission “to educate men about sexual dysfunction and help them find treatment or cure through education, support, advocacy, and research.” Franktalk now helps over 600,000 men a year find physicians, answers, and resources for their problems.