Can We Talk About Sex After a Radical Cystectomy?

By Paul Hebert

4 min read

This may be the hardest post I've had to write... It has to do with sex after bladder cancer, specifically after my cystectomy. I'm pretty sure I won't get through this post without trying very hard to be sarcastic and funny. It is my defense mechanism when dealing with sensitive subjects.

Also, the disclaimer I need you to pay attention to – this is MY experience. It is not advice. Ask your doctor about your situation as everyone's situation, prognosis, and so on is different and medical professionals are the ones to give you the final say. With that out of the way, on with my experience with sex and bladder cancer.

The current erectile dysfunction drug market

Being able to perform sexually is somewhat foundational when deciding if you are a real man or not. It is so important (or is that impotent?) that the market for erectile dysfunction (ED) drugs was valued at roughly 3.7 billion US dollars in 2020.¹

That's a lot of little blue pills. People tell you what is important based on where they spend their money.

I preface my experience with that fact to provide this point of view. Being able to perform sexually vs. being alive is not equivalent. You can get by without an erection. You can't get by without your life. So, regardless of your outcome, be glad you are still here. There are many more people who are happy you are alive than are happy you can perform. Trust me.

Men with who receive a cystectomy

But for men who have had radical cystectomies and/or prostatectomies, there is a good chance you won't have full function after the surgery. I was told at the time of my surgery I would have about a 40 percent chance of having the same sex life as before the surgery.

Sex after bladder cancer

Riffing off the old joke about the guy with the broken arm who asked the doctor if he would be able to play the violin after his cast came off. I asked the doctor if there were other procedures he could do that would give me a 100 percent chance of a better sex life. Heck, if I'm going through the surgery, might as well ask for an upgrade – right?

I'm kidding. I would be very happy with simply having the same abilities as before. We all know every man is a Casanova and always the best of the best.

But unfortunately, my doctor wasn't as good at handicapping sexual performance after bladder cancer surgery as he was a surgeon. I did not emerge from surgery with super-sexual powers. Or even the same powers I had prior to the surgery.

Minimal interest in sex

Maybe it was the 6” scar on my stomach. Maybe it was dragging a catheter and urine bag around for 2 months. Or it could have been the diapers and pads I wore for about 3 months. Or just the fact that more people had prodded and poked and viewed my man parts over the past year than Carter has little liver pills - ask your grandparents what that means. I wasn’t feeling all that sexy and had little interest in sex.

Erectile dysfunction post cystectomy

But I tried. "We" tried. Your partner will be a part of this process as well. That person is key to whether you come out of this happy or miserable. Trust me.

We tried the blue pills. No-go.

We tried injections of "trimix." Trimix is a solution consisting of three different drugs, injected into the base of the penis. You start with a low dosage and move up gradually if the appropriate effect isn't achieved.

This worked.

Weighing options: sex after a cystectomy

But I’ll be honest, from an "in the flow" standpoint, it can be a bit of buzz kill in that you need to stop, get the alcohol out, cotton swabs, trimix from the freezer (it goes bad over time), get a syringe, fill the syringe, do the injection and then wait about 10 to 20 minutes for full effect.

I would also mention, if you typically have your romantic episodes after dinner and a few drinks, the last thing I want to do is wield a syringe around my penis. If you shouldn't drive a car after a cocktail or two, you probably shouldn't be waving needles around down there. Just saying. But it does work. Just a bit of a high-maintenance option.

My doctor has suggested penile implants but to be honest that seems like a rather invasive option for what at my age, isn't quite as important a thing to me or my wife. To be delicate, there are many other ways to be intimate that don't require a fully functioning penis. In fact, when someone takes care of you after bladder cancer surgery, intimacy takes on a whole new meaning.

You will find things that will bring you closer as a couple. Rummy, euchre, checkers, sequence, or even holding hands when you walk the dog. It is in some ways a way to create a different, more intimate relationship.

Net-net

Sex after bladder cancer and a radical cystectomy for some men can either be similar or reduced experiences from the past.

It won't be the same. It will be different for sure.

But as I say about all things I have to do now – peeing on schedule, carrying catheters and pads with me when I travel, and taking a few extra pills – you get used to it.

Play the cards you're given and be happy you are still in the game. I'm happy I get up each morning even if I don't get up each night. Wink, wink. Tell us about your experience with sex after a cystectomy in the comments below, or share your story with the community.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Guy Wheatley Member
I wrote a similar piece. My experience and yours are very similar.
Linda Urbanski Member
<inline-mention username="Paul Hebert" user-id="2080096"/> - I am sure as you stated, that this was a difficult article to write. As a female some things are different but some are the same. I would like to know how many people had enough information prior to their RC to ask about sex after surgery. Or how many doctors broached the subject pre- RC. I know that it was not discussed with me at all and I have to wonder if my age - 63 - at the time, was the reason or if maybe it was not a discussion because I did not bring it up. It took a prolapse 6 months post RC for my new OB-GYN surgeon to bring up the subject. Long story short, she gave me some options and I was able to get back in the saddle so to speak a few months later. I think sex needs to be a pre-RC discussion with every patient and not something they find out about later. Thank you for this article that very probably gave some people another option if they are struggling with intimacy post RC. Being alive is #1 but getting back to as close to where you were pre-RC is a close second. My best to you. Linda ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
Linda Urbanski Member
<inline-mention username="Paul Hebert" user-id="2080096"/> - Thank you for this article again and for your honesty and openness. Women may have a total hysterectomy and part of their vagina removed also. I was not told of this entirely prior to my surgery or may be it was mentioned and I was not completely paying attention -( another great reason to always have someone with you at appts) but I was able to find a way to revive my prior "abilities" later on. I feel for those who are much younger than I was or those who were not informed of this change - be it men or women. Thank you for bringing humor to this delicate subject and reminding us all that the most important thing is that we are here and living life each and every day. And for providing information as to an option for men to look into if they wish to do so. I am thankful every day to not be pushing up daisies yet. My best to you. Linda Urbanski (moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)