Being bodies: sex and erectile dysfunction

"Sex and erectile dysfunction" written over a picture of a Scottish red bridge at twilight.

Our new series “Being bodies” aims to explore our relationships with our bodies, from head to toe and everything in between. We’re kicking off our series by talking about erectile dysfunction, which affects up to 80% of people with penises after pelvic cancer surgery. Erectile dysfunction (ED) can also affect people on treatments which affect their hormone levels. This can include people who have been diagnosed with prostate cancer and penile cancer, amongst others. ED can affect people for lots of different reasons, both physical and emotional. It can have a big effect on people’s sex lives, relationships and self-esteem. If this is you or your partner, you’re not alone. Today we’ll be discussing this with the help of quotes from Lorraine, a nurse specialist and sex therapist.

“There is often a focus on ‘functional’ outcome if sex is discussed during treatment, such as hardness of erection and this excludes the emotional and potential relationship impact.”

Erectile dysfunction (ED) means that you may find you have problems getting or keeping an erection.  It’s important to note that just because you are having pelvic cancer surgery or hormone treatments, this does not mean you will definitely experience ED. While this can often be temporary and go back to normal after treatment ends, for some people it can be a long-term issue.

Your medical team or GP will be able to offer guidance and different treatments to help with ED. Lorraine has a video on Macmillan’s YouTube channel, to demonstrate what these treatments might look like.

“If [ED] does occur, it is better to be proactive with the various treatment options rather than wait too long. Check with the healthcare professionals looking after you regarding your own circumstances and any potential contraindications to their use.”

“Ensure you speak to your [gp], I’ve tried viagra, sildenafil and tadafil with no real joy. After surgery I was prescribed a penis pump to help mechanically which had some good results.”

Community member

Emotional and physical effects of cancer can impact how both you and your partner feel about sex. Feeling less “able” to have sex, or like there’s something not right, can have a big impact on how you might feel about yourself and your body. It’s important to remember that there’s no such thing as a normal sex life, either before, during or after treatment. Even if you or your partner haven’t been affected by ED, your sex life may still change if you are affected by cancer. How often you have sex, or what you do when you have sex, can both be different over time.

“Partners can worry about being sexual with their partner for reasons such as it can cause damage after surgery or they can catch the cancer, neither which is true. There are many more questions to ask such as… whether using treatments for penile rehabilitation is making her feel ‘isolated’ and where she sees her role now in sexual intimacy. We have this information about relationships and sex that can be helpful to read.”

Lorraine cites communication between you and your partner as one of the most important tools to help you both feel better about having sex, or to talk to your partner about not wanting to have sex for a time. Lorraine talks about how to approach conversations about sex in her YouTube video for Prostate Cancer UK. This video can be relevant even if you or your partner haven’t been diagnosed with prostate cancer.

It can be important for some couples to explore new ways to have sex and feel good, that they might not have tried before. This can include exploring having sex on your own to see what you might like, otherwise known as masturbation.

“…my husband has had treatment for oesophageal cancer. He’s lost a huge amount of weight as a result. Our sex life has been affected because he feels very insecure about how he looks now, and I find his extreme thinness distressing. It’s hard to talk about it but we have a bit. We try to make sure we have plenty of kisses and cuddles, in bed and out, to try and keep close. I have a vibrator which we used to use together on occasion previously but I do use on my own sometimes...I regard it as a ‘work out’ and not a substitute for my love for my husband and desire to eventually have sex with him again.”

Community member

Sometimes people seek guidance and support from sex therapists. Lorraine explains a bit more about what sex therapists can do to help people around their sex life:

“Sex therapists are professionally trained to help people explore their sexuality. Rekindling intimacy when there has been ill health (especially after a cancer diagnosis) can take you both on a journey of exploration. We may get used to touching the same areas of the body during sex, often breasts and genitalia which can become prescriptive and boring. Desire starts in our head, our skin is a large erogenous zone that when touched can help with arousal! Sex therapists usually ban intercourse and guide people to explore each other’s bodies without having any expectation to perform (all done in the privacy of your home).”

The College of Sexual and Relationship Therapists have lots of tips and guidance online around sexual wellbeing, including rediscovering what you enjoy and busting common myths about sex. This includes myths around having an erection. Did you know that an erection isn’t necessary for sex involving someone who has a penis?

“It is helpful to know that you can orgasm without having an erection. Your partner may stop sex play if they do not see an erection develop and not realise that you are becoming aroused which may be to the point of orgasm. Importantly, sexual pleasure and satisfaction can be achieved without penetration. The use of sex toys and lubrication can also enhance sex play and the fun that can be had from exploration.”

Whether or not you have a sexual partner, ED and/or being affected by cancer, can still affect how you feel about yourself and your body. Sometimes people can describe feeling like less of a man, or feeling uncomfortable about their body. It can be really helpful to be open about how you’re feeling with a friend, or here on the Online Community.

The Online Community is a safe and anonymous platform, and the Community is here to reassure you that you’re not alone. It’s normal to talk about sex, penises, and erectile dysfunction here.

 “Sex is different now but we are taking it slowly, we ordered a few things online and are just having fun finding whats works for us, penetration sex has been possible, we are very lucky that we are very open with one another and I would be lying if I said that things are great, but we we know that it is early days and hopefully our sex life will return to what it was before the op.”

Community member

If you’ve been affected by ED, why not reach out for support on the Online Community? As we’ve discussed, ED can affect members of all our groups, including prostate cancer, penile cancer, bowel (colon and rectum) cancer, and testicular cancer. While Lorraine’s ‘Ask about sex’ session is closed, please remember you can reach our nurse specialists in our ‘Ask a nurse’ session for some professional support.