Like most patients, I was shocked to hear my diagnosis of prostate cancer (PCa) at 46 years old. My shock was compounded by my father’s death from prostate cancer the day after my diagnosis! Things were not off to a good start. I was married, 2 kids, and dealing with cancer was not part of my life’s plan.

Fast forward to postsurgery and things were still not going so well. The surgery was successful, I was going to be fine; I was a cure. Strangely, I never doubted that for an instant. But the side effects from surgery, particularly the sexual side effects, were not going as promised. I was confused.

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 we spoke! When it came to sexual dysfunction, however, the internet was full of conmen and scammers selling pills, potions, powders, and pumps. When it comes to male sexual function, the internet is not a safe space!

In desperation, I finally started what I expected to be a small discussion board for PCa men experiencing the host of sexual side effects caused by PCa treatments. I called it “Franktalk” because I needed a place to be blunt, open, honest, and get the unvarnished truth. I was surprised that 200 men joined the discussion board within the first month.

Around the same time, I was part of a study for Avanfil (Stendra) at Mount Sinai Hospital in NYC, where I had my surgery. The urologist I was seeing was Dr Natan Bar Chama. During one office visit, I told him about my little project, Franktalk.org. He asked me a lot of questions and then told me I was onto something because sexual function issues affect millions of men and goes far beyond PCa. He explained the prevalence and variety of men’s sexual health challenges and encouraged me to expand the mission of Franktalk to all men.

I took his suggestion and turned Franktalk.org into a site where men with erectile dysfunction could come for support, suggestions, and to discover they were not alone. Men began to share in an open, honest, and vulnerable manner about their treatments and their treatment experience. We soon had men from all over the world sharing their stories. Men offered each other support, encouragement, hope, and even some tips and tricks to help treatments work and restore their sex lives.

At first, men 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. At that time I was a teacher at a boarding school, and the one skill I was able to bring was an ability to break down the medical information I received 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 was trying to decide how to fulfill this new calling I was experiencing. I finally decided to become a sex therapist because the crisis for so many men was not 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 men and their relationships. My goal with men to help them embrace their new reality and experience rewarding sex lives—even if their sexual function no longer resembled that of their youth. Eventually, Dr Michael Werner hired me to work for him at MAZE Men’s Health, a medical practice for men’s sexual and reproductive health in New York. I see nearly 1000 men a year.

I was amazed to discover that the medical community was watching Franktalk as well. Over the years we have had several researchers look to Franktalk as a source for understanding the patient experience. Both corporate and academic researchers have scoured the pages of Franktalk to gain insights into what men are experiencing. Two recent studies include one published in the Journal of Sexual Medicine, “A Thematic Analysis of the Online Discussion Board, FrankTalk, Regarding Penile Implant.”¹ Lu et al wrote in their conclusion:

Patients use online discussion boards like Franktalk.org for social support, medical advice, and validation of their concerns. Providers should be aware of these online topic focuses to help open a discussion with patients about concerns they may feel are difficult to approach with providers.¹

Another study appeared in the International Journal of Impotence Research titled, “Thematic Analysis of the Psycho-sexual Symptoms in Patients with Peyronie’s Disease Present on Online Forums.”² This study found while people on these forums discuss the psychological burdens affecting those with Peyronie’s disease, few seek help from a psychologist or therapist. The psychological stress may persist even after successful Peyronie’s disease treatment.

Creating Franktalk changed my life and allowed me to change other men’s lives. Franktalk 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 men 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.