Sex & Intimacy after a Radical Cystectomy

Background

So, for the lovely people who don’t know... Hi! I’m Anita and in 2016 I was diagnosed with a neuroendocrine, small cell bladder cancer.

The cancer quickly spread to my lymph nodes, liver, hips and arm bones.

I underwent two rounds of six chemotherapies and 3 large rounds of radiotherapy, which thankfully helped to shrink the tumours.

I was told to go away and live my life.

Why did I chose to have a Radical Cystectomy?

Living my life sounded perfect. But there was one thing standing in my way. The pain.

After conversations with my oncologist about pain management, a Radical Cystectomy was mentioned. I was told that it probably wouldn’t make a difference to my diagnosis and that I should think carefully about it as it was a huge operation.

A No Brainer

The pain became unbearable.

I was at my unhealthiest, my heaviest and to be honest with you, I hated my life. It wasn’t a life. I just sat, high on painkillers, rocking on the sofa, ticking off another day of my life.

If this was going to be my life, I didn’t want it. What was the point in being alive, but being unable to take part in life? I was just living painkiller to painkiller.

My husband and I had spoken about the procedure after we saw the oncologist and he saw how miserable I had been in the months following the discussion.

It was a no brainer. If I chose the operation, there would be some pain and healing at first, but after that I could live pain- free!

I needed to try.

I made an appointment with the consultant.

The Sex Chat

During the appointment, we went through all of the usual stuff for an operation and we briefly touched on how my sex life might be different after the RC.

In all honesty, sex was the last thing on my mind. I was just trying to stay alive. Looking back, I wish I might have asked more questions about RC’s and sex.

I was told that they wouldn’t know how much of my bladder they would need to remove until I was in surgery.

It’s quite common for women to have a hysterectomy alongside an RC. I was told they would try to save my ovaries to try and stop my body going into surgical menopause, but again, they wouldn’t know if that was possible until I was in surgery.

I feel that we gloss over how RC’s can change a woman's vagina. I was warned that my vagina may be shortened, and I had no idea what this meant in terms of continuing a healthy sex life and being intimate.

I did feel a little uncomfortable speaking to a male consultant about sex, especially as he doesn’t have female parts! I would’ve liked to speak to a woman, maybe even someone who had been through the procedure, to have an open and honest conversation.

Recovery

It took my body around 8 months to feel “normal” after the RC. I felt very conscious about my stoma bag.

My husband and I had lots of honest conversations about sex during my recovery. Although he said he found me sexy and loved me. It was how I felt about me that mattered.

I couldn’t see how he could find me attractive. I had put on weight, and I was now peeing into a bag! Such a stunner.

Giving it a go

It took us a year to even attempt sexual activities after the operation and we were both incredibly nervous.

Not only were we having to navigate being intimate for the first time in a year, we also had to do this with a bag of pee in the way... Not the sexiest.

Sex for us had become anxiety inducing. My husband was scared he would hurt me, and I was bloody petrified!

We chatted to the Urology Nurse, who basically told us we were overthinking it and to have a drink, loosen up and go for it!

That night, we got drunk as skunks and decided to give it a go!

I was worried about my bag popping so techniques had to be changed in order for me to feel comfortable. I used a strapless top that I positioned around my stomach, to support my bag and give me confidence that it was safe and secure.

The big O

As I'd gone into the menopause, we were told that we might need to use lubrication. We had never used it before, and it was definitely a learning experience.

I didn’t quite realise how different my vagina was... now there’s a sentence I never thought I would write.

I also wasn’t prepared to have such a different orgasm. Other women I have spoken to have all said there is less intensity to their orgasms now! Boooooo!

Penetrative sex was painful, and we’ve since realised that the pleasure for us is in being intimate in different ways. It’s massage, kissing, cuddling, touching and feeling.

Let’s sum it up

My advice is to talk about sex at every point you can. Talk to your consultant, a urology nurse or even a sex therapist. There’s no right or wrong way to approach this subject after a life changing surgery.

Do what feels natural and make sure that you feel comfortable. Make it fun, take it as slow as you need to.

Remember you are amazing, and we all deserve love and intimacy in our lives.

Appreciate your body. Love every scar, every laugh line, every lump and bump and let them remind you that you are ALIVE!