Unusual Cancer Treatment Issue

In early 2018 a biopsy indicated I had prostate cancer. Following my doctor’s advice, I had my prostate removed. I don’t know if it was due to surgical error or that my bladder didn’t drop, or both. Genetics could have played a part in it, but I will never know. It quickly became apparent to me that my urethra was too short. The loss of length was more than the length of my appendage, and it caused pain.

Accepting what needed to be done

Less than two years later my PSA started to rise and the doubling time was 3 months. Salvage radiation with ADT seemed to be the next logical step. I seem to have unusual side effects from treatments, and radiation was no exception.

At about the same time that I started ADT, I also started therapy to fulfill the requirements necessary to get a Zero Depth Vaginoplasty. It makes you female externally without the possibility for penetration. This probably seems extreme, but there didn’t seem to be a better way to fix my urethra problem, and I couldn’t live with what I was enduring. I considered implants, but that seemed dangerous considering what I could feel going on inside my gut. I just accepted what needed to be done.

I had the surgery, and I now take estrogen. Everything I have done medically since early 2018 has been to stop cancer or relieve pain. I have done nothing for sexual reasons or as some kind of fetish, but some around me still have trouble with it. My adult children barely speak to me.

Feeling a difference

While trying to learn and understand what was done to me in my original RARP, I argued with numerous people who were adamant that I was just suffering from a tunica that had shrunk due to lack of erections. I only went a short time without erections, although the erections were short in length.

After my vaginoplasty, the surgeon said that my urethra was the correct length for a female anatomy. She said that I was the first person they had operated on that didn’t require them to shorten their urethra. This confirmed what I had instinctively known from my attempts at penile rehabilitation.

When I woke up in recovery after the vaginoplasty, I could actually feel the difference. My gut was no longer tied in knots. I had several months of relief, but I eventually realized that the impacts of cancer treatments were not over yet.

Experiencing pain again

I started experiencing pain again, but this time it was different. At that point, I was still learning the new normal of my current anatomy. Women typically don’t talk with “men” about issues they have to deal with, so I could only draw from my wife’s experiences. She had never experienced what I was enduring. Because of that, I didn’t have words to explain what I was experiencing when I went to my first return appointment with the surgeon.

I think the surgeon believed I was either overly sensitive to pain or dealing with some sort of phantom pain. She even made a comment about me not understanding the normal female experience. Since the cause for pain was not obvious at my first appointment, she said it was possible that I might have nerve damage from multiple surgeries. Because of that I asked for Gabapentin and received a prescription for it. Gabapentin did make a difference, but it was not enough. It did at least allow me to get some much needed sleep.

Trying to get the doctor to understand

It took two appointments with the surgeon to get her to understand this was not just a variation of my post RARP issue. In the week leading up to my second appointment, I wrote a detailed letter for my surgeon to read. At this point I still believed that my pain was due to the vaginoplasty. I told her that sometimes it felt like my skin in the affected area was on fire. She left the room to call and discuss it with the urologist member of their team.

She said she did not think this was from the vaginoplasty, and said that she and the urologist had decided it was more likely from radiation damage to my bulbous urethra area. She prescribed a compounded prescription crème to apply to the painful area and said she was also considering pelvic floor therapy. Since this problem hadn’t occurred for almost 18 months, I hadn’t connected it to the radiation. Using her prescription for just a few days made a huge difference.

Persistence pays off

Doctors are human, and it can take more than one exam or discussion to find a problem. I have learned persistence along with being prepared pays off when you talk with them. If something you read on this forum seems similar to what you are facing, ask questions or make a comment. We are not doctors and can’t diagnose, but each of us can discuss what we have experienced.