Our recent Community News blog ‘Cancer and Fatigue – when will I start feeling less tired’ sparked off a conversation in the bladder cancer forum around sex after cancer treatment. It’s also a subject that many of you are talking about across the Community.
Some people might find sex an embarrassing or tricky subject to talk about. Some are worried that it might be considered trivial or irrelevant to think about your sex life when you or your partner have cancer.
Here in the Community, no subject is taboo. You can post completely anonymously and talk with others in similar circumstances. You can talk about any erections and penis pumps, vaginal dryness and lubricants, dilators or prosthetics. You can chat about how your cancer diagnosis, side effects or body image have affected your sexual function and get emotional support. However difficult the subject might be to broach with family and friends, the Community is here for you.
In today’s Community News Blog we will be highlighting some Community conversations around your sex life when you’re living with cancer. We hope that it will encourage others to talk about this important issue if and when you need to.
The bladder cancer forum has recently seen an open and frank chat about the effects of cancer treatment on member’s sex lives.
“The elephant in the room is - takes deep breath then says – sex after a radical cystectomy? - there I've got it out - I might be 70, but I still have (or had) an active sex life with my partner of 40+ years. When other bits of me are removed, along with the bladder, what are the chances of having any normal intimacy?” - Community member, bladder cancer forum
“The thing that worries me most is how the potential issues with erectile dysfunction may affect me. I suppose it's maybe more a man thing, but the thought of not being able to respond, when being aroused, I find quite hard to contemplate!“ - Community member, bladder cancer forum
“I was told very little about the sexual aspect of having a cystectomy…the vagina is made much shorter and most of the internal gynae bits are removed. You feel very different internally." - Community member, bladder cancer forum
“Sorry if this question seems a bit too intimate :-). I've been told and I have read everywhere that a big part of the vagina is removed during surgery. But I thought that there would still be a bit left, enough to at least put a finger inside. In my case, 9 weeks after surgery, I still can't even put the tip of my finger in, it feels really hard and closed. I've tried to find information about that, as I'm worried something unusual might be going on. But I couldn't find any info anywhere... Is anybody else out here having the same issue? Thank you :-)” - Community member, bladder cancer forum
Talking about your sexual function might feel a little uncomfortable for some people. But once you've shared, you're likely to find that others are going through similar and that there's lots of support available.
Another member of the Community had some useful advice around speaking to your GP.
“But the thing is to REALLY push your medical team to give you proper answers and refer you on for whichever therapy/combination of therapies [be it tablets/injections/implants or whatever, I really don't know all the details] will be of most use to you. Do NOT suffer in silence; our old GP firmly told us that a healthy sex life was part of a healthy life and readily prescribed to suit, which many won't.” - Community member, bladder cancer forum
If you’re feeling uncomfortable about speaking to your doctor about sex, it might be helpful for you to break the ice on the Community first. By talking to others in similar circumstances, you’ll feel much less alone and maybe even get some tips around what to say, or how to access the best support.
“Just to say no need to apologise for anything. We all go through intimate procedures and so no need to try and skirt around the facts. I hope someone here can help.” - Community member, bladder cancer forum
It's ok to ask questions about sex, your genitals, sexual health and everything around this when related to you or your loved one’s cancer. We just ask that you don’t post any medical images, or photos of private body parts on the Community.
There are lots of things you might need to consider when making decisions during or after cancer treatment. Sometimes this might include thinking about your future sex life. During treatment for testicular cancer, this member had questions around prosthetics.
“I have two weeks until my orchidectomy and I'm split on whether to go for a prosthesis. I know that most men who choose to get one are satisfied with the result, but some report that it can interfere with exercise or sex, or that the size/firmness/scrotal position are not ideal.” - Community member, testicular cancer forum.
Members shared their personal experiences in response, which we hope was helpful in making that decision.
When you need further expert support, Macmillan also has some online information and support about sex and cancer here. The pages include some tips about speaking to your healthcare team if you need further support. There’s also links to Macmillan booklets about cancer and your sex life, which you can download or order in paper format.
In the vulva cancer forum recently, a member going through extensive treatment wanted to speak to others who understand.
“I am 30 years old with Vulva cancer. I had a tumour on my labia and unfortunately for me it was within 2cm of my clitoris so they have removed that… I have now been told I will need radiotherapy to my Vulva and to be honest they have me worried sick talking about the potential side effects. I know everyone reacts differently but would love to hear some honest experiences - whether they are good or bad. It sounds like it could be horrific - will I ever be able to have normal sex again?!” -Community member, vulva cancer forum
The Community is a safe space where you can share your fears when you don't feel like you can speak to anyone else, as the member goes on to explain.
"I feel like I can't talk to anyone about this as I am trying to stay strong and positive." -Community member, vulva cancer forum
In this thread about surgery for prostate cancer, hearing frank and positive experiences has made such a difference to some members.
“I’ve had the surgery, and 10 weeks on am dry and have returned to a full and active sex life, albeit with the help of the blue pill. The only difference is dry orgasms which feel slightly different but no less pleasurable.”-Community member, prostate cancer forum
This member replied to let them know what a difference it has made to the way they were feeling.
“Firstly thank you for your honesty. I have considered suicide from my first diagnosis. It was the fear of not being sexual competent. This has really really helped me. Thank you” - Community member, prostate cancer forum
It can also be difficult when you’re supporting your partner through cancer and experiencing difficulties in your sex life. We're here for you too.
“We had a great sex life and after the op there was movement shall we say so I thought fabulous we have little nerve damage from the op. However even though he can he now chooses not to and has buried his head in the sand which has meant that there is now no sexual contact at all which makes me resent him big time. It may sound harsh but I thought he would be relieved that it still worked! Clearly not. No sex of any kind for the past 2 years. That door has definitely closed in his eyes but it’s just like the elephant in the room that we don’t speak about.” - Community member, prostate cancer forum
Especially if you’re caring for your loved one, you might feel your relationship has changed which might also affect your sex life. Macmillan has some information to help anyone supporting their partner here.
You can also contact Macmillan's Support Line to get support, or just to talk things through. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
You can also ask questions to our experts in the Community through our 'Ask the Expert' sessions here.
If you'd like to read more Community News Blogs around cancer and sex, you can find the following recent titles:
If you have any questions, comments, or would like to suggest future blog subjects, please do let us know below. Alternatively you can email the Community team at email@example.com
Anyone here diagnosed with Waldenstroms Macroglobulinaemia?
Thank you for your comment, I hope you found our blog helpful to read. I'm Eliza from the Community team.
The best place to find people with this diagnosis would be our Non-hodgkin lymphoma group, as we've had multiple conversations in the past there from people with Waldenstrom's Macroglobulinemia.
We also have a group for rarer blood cancers in our Other Cancers group.
Wow - looks like I started something back there a bit. Well done the Macmillan Community team for picking up on what is a very delicate aspect of the effects of cancer surgery on our more intimate parts.
Thank you so much to you KidneyBeen for starting the conversation, I imagine it will be really helpful for anyone with intimate questions they're not sure whether they can ask.
I'm going to post a link to the blog in some of the forums, partly to thank you KidneyBeen and others who inspired the blog, but also to make sure anyone who could benefit will see it.
I'm terrified of having sex with my husband who has aggressive lung cancer as I don't want to cause him problems breathing.