RARP Part 1: Unexpected Consequences
Before beginning this, I want to say that I am an outlier and mine is not a common outcome.
In January of 2018 I was diagnosed with aggressive prostate cancer. My urologist informed me of two possible issues I might expect: ED and incontinence. I was told that radiation was possible after surgery, but not the other way around. I did a quick internet search and didn’t find anything contradicting what he told me.
It seemed that if I waited too long to decide, my cancer might possibly breach my prostate and spread. I had RARP in March. Afterwards I endured some incontinence, but something else that was not on my radar made me question if I wanted to live.
Losing penile length
I had never before experienced a panic attack, but after RARP I started having panic attacks. I felt like my gut was under tension. I could not sleep on my back without experiencing a panic attack, even if I rolled over in my sleep. Prior to surgery, my urologist indicated that I might lose up to a ½ inch of length. That seemed insignificant at the time, but is not what occurred.
Soon after surgery I had about an inch remaining while standing. Sitting down retracted my penis to the point of pain and usually caused me to wet myself. I wore Depends around the clock and avoided sitting up straight for 3 years.
Trying to address it
My urologist suggested trying a penis expander, so I used one religiously for almost 6 months, starting around 4 months after surgery. I was really too short for the stretcher, but I was able to pull enough out to make it work. Not long after starting traction, I had my first spontaneous erection. It was almost 1.5 inches long, but at least the nerves that were left were waking up.
When I stopped achieving gains, I switched to an expensive battery operated vacuum pump. The pump helped more than traction did. I did penile therapy for over a year, sometimes more than recommended. I regained almost all of my girth.
Little help from the medical community
Although uncomfortable discussing my anatomy, I mentioned my loss at every urology visit. The urologist always made light of it, saying everyone loses about an inch. I would have given my pickup truck away free to anyone who could make my loss be only 1 inch! Eventually the pain forced me past my shyness.
Throughout all of this, I received virtually no help from my local medical community for my issue, so I researched the internet like my life depended on it. In reality, it may have. I left no stone unturned. I learned about human anatomy, cancer and ED on my own from the internet in order to diagnose myself. I couldn’t continue to live this way.
Researching on my own
I researched multiple PCa forums, ED forums, and urology websites. I found some urology sites that suggested most men lose about an inch after a year if they use aggressive therapy. Because of the tension in my gut while stretching, I was certain my urethra was too short, but EVERYONE was adamant my tunica had shrunk. NO ONE seemed to hear me.
While researching, I talked with people who had implants installed to make sex possible. I learned about two major brands of implants, and I studied both. It seemed the urethra could be stretched, but I wasn’t sure how much. I found that people who lost significant length seemed less impressed with their implants.
Because of what I felt in my gut, I could not imagine getting relief safely by having one installed. In fact, it seemed dangerous to me to even try. I am not making light of anyone’s experiences, but I found no one else like me.
A solution I had not considered
I searched a transgender forum thinking maybe female to male transgender individuals might have an answer. I think that the public’s perception of transgender surgeries is wrong. And the success rate for urethra lengthening in one surgery is also not very high to me. It carries more risk than I was willing to take.
During my research, it became apparent there was no easy way to fix me. Eventually I stumbled upon a eunuch forum where I found a solution I had not considered. I am a Christian, but while searching the eunuch forum I found and read some people’s stories that brought me to tears.
The unlikely solution I found on that eunuch forum eventually became my only possible cure. The solution was what's called Zero Depth Vaginoplasty, which makes you female externally without the possibility for penetration, but works with a short urethra. It was something I wasn’t comfortable telling my wife, so I searched unsuccessfully for another six months before I did it. At the time, I was puzzled at how easy it was for me to accept such a solution and why I couldn’t get it out of my head.
Telling my story
I have multiple reasons for telling my story. RARP changed my life in ways I could never have imagined. I learned a lot from my experience and gained some close friends in groups I would not have ever talked to previously. I'll share more in Part 2.
Have you made personal connections through your journey with prostate cancer?