Speaking Out About the Unspoken: Sex After Cystectomy

Before I had my radical cystectomy (bladder removal surgery) in January of 2017, I had an appointment with my doctor to discuss the procedure. Right at the very end of this meeting, I was told that I would have the anterior wall of the vagina removed during surgery. I didn’t really know what this was or what it entailed. And, to be honest, I really didn’t care. You could have chopped my arm off as well if that was deemed necessary to relieve me of this cancerous tumor within.

Fast forward to one year after my cystectomy

One year later and the "new normal" was well and truly in place. I had found the correct pouch that worked well for me. Leaks were almost non-existent, and a regular routine was in place, a routine that now felt normal. Everything was going back to how it used to be. Hospital appointments were now becoming less frequent, and my general health had improved dramatically. But there was one essential element missing from my life, and that was intimacy with my husband.

Discovering I had a problem

The first time that I was aware of anything being different, was when I had thrush and had to insert a pessary. When placing the applicator into the vagina, it wouldn’t go in. There was something stopping the pessary from being inserted. I was initially terrified; all sorts went through my mind. The first thought was, "Is it another tumor? Is that what’s stopping me from inserting this pessary?"

Finding out what the problem was

After my initial panic, it turned out that the removal of the anterior wall of my vagina was what had caused this issue. By removing the anterior wall, this, in turn, led to the length of the vagina being reduced dramatically. I hadn’t been prepared for this at all. In fact, it made me quite upset and angry.

Speaking out

But rather than harboring these negative emotions, I started to speak out. I would tell my story to anyone that would listen. I wrote blogs, articles, and tweeted about this all over social media. I needed to speak out about the unspoken.

Earlier in the year, my tweets were picked up by a teaching hospital. I was invited to go and speak to stoma nurses, cancer nurse specialists, and urology students and doctors.

It was during this session that I became quite emotional. I realized that although I was happy to share my experiences and thoughts on how my cystectomy had affected me, I had actually done nothing about trying to get help. I was emotionally and physically suffering.

Seeing my GP to get help with my sexual health

I came home from the meeting and called to make an appointment with my GP (general practitioner). I wasn’t coping and had finally, through an open forum discussion, acknowledged my own issues. I went to see my lovely lady GP. She admitted she had little knowledge or experience with this type of surgery but she would do her best to work through the issues I had with me.

She gave me reassurance, and we decided that she would start with an internal examination. She said almost immediately, “Mmm I can see your problem. Your vagina is around 3cm long." I was stunned. She went on to say that everything was nicely healed and looked very healthy.

Next steps to improve my sexual health

My GP decided that prescribing an estrogen cream would help with improving the elasticity of the vaginal walls. She also advised me to go see a sexual physiotherapist. She would arrange an appointment for me. Finally, I’d had the courage to admit and seek help for my most personal problems. And do you know? It was so much easier than I anticipated. I will update you when I’ve had my appointment. But please don’t suffer in silence. Your doctors are there to help, but for them to do this, we have to be completely honest in communicating what our problems are.