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Radical Cystectomy & Sex: A Woman’s Perspective

I had a radical cystectomy just over a year ago. Prior to surgery I was informed that the surgery would involve the removal of my bladder, cervix, appendix, ureter, part of the small bowel, a number of lymph nodes oh, and the anterior wall of my vagina. The removal of the anterior wall of the vagina was mentioned at the end, in a very matter-of-fact way, and a quick comment to say that the vagina may be a little “shorter” than before surgery. I’d had a hysterectomy years earlier, or otherwise that would have also been done. That was it, no further information given.

Hospital stay

The surgery went ahead as planned and my recovery was ahead of schedule.

The physiotherapist came to see me, a middle-aged, rather scrawny, timid looking woman who looked like she could do with a good meal. I was given an A4 sheet of exercises, all with accompanying diagrams of how the exercises should be performed. She went through some of the exercises with me and then said, “I don’t know if you’re having sex,” then up came her hand and she said, “and I don’t want to know if you are, but here are some pelvic floor exercises”.

That was it, that was the only time throughout all my appointments, surgery and hospital stay that the “S” word was openly mentioned by a medical professional, albeit in a “we don’t wanna speak about it” kind of way.

Healing

To be honest, after surgery, sex was the last thing on my mind. The removal of my cervix and part of my vagina for me took the longest time to heal. It was painful to sit on hard chairs or to be on a bumpy car journey. I started to take a soft pillow out with me. This eased the pain of sitting considerably.

I guessed that the internal healing would take around the same time as after having a hysterectomy, around six weeks. I guessed – no one actually ever advised me. After the “we don’t talk about sex” speech from my physiotherapist, I really didn’t feel comfortable in asking questions.

What I read

So with the lack of any sexual information from my medical practitioners, I began to read. Thanks to the internet, there is lots of information out there. However, not all is very encouraging. But most end by saying that you will return to a “new” normal.

Getting back to “normal”

A new normal, what is a new normal? When will my “new” normal start? The truth is, no two women are the same. We all heal at different rates and will have our own individual issues to deal with. So when can “normal” relations be resumed?

You do need to give yourself at least 6-8 weeks to heal, before even considering penetrative sex. But in the meantime, there is nothing wrong with a kiss and a cuddle. I started to think of it as “courting” again. Getting to know each other’s bodies again.

Lack of libido

You may find that you have no interest in sex and worry that you have lost your “libido”. FACT – your body has just been through one hell of a traumatic ordeal. So don’t beat yourself up, be patient with yourself. Rest, eat well, look after yourself. You need to love yourself again before you can engage with loving someone else.

Before having sex, what to consider

There are a few practical things to consider before engaging in penetrative sex.

You may want to consider the use of medical dildos, to help to stretch the vagina. There are many different sizes, and it’s considered best to start with a smaller one. Your cancer nurse specialist should be able to put you in touch with a “sex therapist” who can help with this.

Also, vaginal dryness is a very common problem. This is easily remedied by purchasing a lubricating gel. These are available to purchase over the counter at your local pharmacy.

Lastly, sex may be uncomfortable at first, even a little painful. Listen to your body, and be prepared to stop lovemaking activities. This is perfectly normal at first. But the key thing is to talk to your partner. Share your fears, tell him to be prepared that he may have to “stop”.

What have I learned?

Sex is different than before my RC, but different doesn’t mean bad.

That with perseverance, time, some professional advice, and a loving partner, a good, healthy, sexual relationship can be resumed after a Radical Cystectomy.

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.

Comments

  • Shirley Norris moderator author
    1 year ago

    Hi Juliana17, I’m so glad to hear that you were able to speak to your Doctor. He is certainly best placed to give you medical advice.
    I too had the anterior vaginal wall removed and it did cause considerable shortening.
    I was unaware of this until I had to insert a pessary. I was totally shocked as I didn’t seem to be able to insert it. That’s when I realised just how short the vagina had become.
    However, I have to tell you that it does get easier and starts to stretch naturally with gentle penetration.
    I won’t lie to you, for me it was a long slow road to resuming almost normal intimacy. But don’t give up, relax and slowly enjoy. Your husband sounds like a great gentleman. But I truly understand your worries and concerns.
    You are still very early on in your recovery period. So don’t give up, keep trying and slowly over time your vagina will start to stretch.
    Surgery for this if it’s still a problem is a long way off. Be kind to yourself things will improve.
    I became very impatient and thought things would never be the same again, I was totally unprepared.
    But I promise you with time and perseverance intercourse does become easier. Please take care, and remember that the we are always here to support you. Shirley

  • juliana17
    1 year ago

    Thank you for responding. I have been speaking candidly with my surgeon about my lack of having. Sex. The surgeon Indicated they want me to hold off on the medical dilators until at least January ( my surgery was July 31) I think it was because of the removal of the anterior of the vaginal wall and the shortening it caused. He gave green light to try sex but unfortunately my husband cannot penetrate but about an inch. I dont know if rhis will get better but surgeon said I could have a surgery in a few years to correct that problem. It’s all very overwhelming. My husband has been great but I do honestly worry about our lack of sexual Intimacy.

  • juliana17
    1 year ago

    Hi Shirley. I enjoy your articles. I’m 6 weeks post op from radical cystectomy. I wanted to know how long it takes to stretch out the vaginal wall? I fortunately have my nerves working down there but am very distressed about penetration not being able to happen. I purchased medical dilators and should get those soon. I just hope to be able to get back to some normalcy in my sex life with my husband.

  • Shirley Norris moderator author
    1 year ago

    Hi there Juliana17. Thank you for your feedback on my articles. Returning to an active sex life takes a little time and patience. Purchasing the medical dilators will surely help in stretching the walls of the vagina. But you need to be aware that the length of the vagina will have been shortened too. With regards to how long it will take – I cannot truly say, as we are all different in the length of time it takes us to heal. You need to do what feels right for you. You may also experience dryness so using a lubricant may be good idea. But most of all don’t rush at it, take things slowly and advise your partner that you may have to “stop” if things become uncomfortable or painful. Rest assured that you will get your sex life back but 6 weeks is still very early days yet. It might be worth, if you are able, to engage with a “sex counsellor” who will be able to talk to you and if you wish your partner as well. They can offer great advice. I hope this helps and please don’t hesitate in getting in touch. We are always here to support you. Shirley- bladdercancer.net

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