When Rebecca, 31, was diagnosed with breast cancer in early 2019, her sex life with her partner was a welcome distraction. "We were like teenagers again. There’s nothing like being faced with your own mortality to make you want to feel alive and nothing makes you feel more alive than having sex," she said. "With cancer I felt let down by my body and sex became a way of reconciling myself with it. It became a psychological thing I needed to do," she added.
However, when Rebecca started chemo, the treatment affected her sex life. Specifically, she suffered from vaginal dryness and then vaginismus, a condition where the vaginal muscles tighten up, preventing penetration. "When I asked my doctor about whether it was a side effect of chemo, she didn’t know how common it was because no one talks about it."
Although one in two people in the UK will be diagnosed with some form of cancer during their lifetime, its impact on sex and intimacy is rarely talked about in the medical field, let alone wider society. Naturally, going through cancer treatment impacts your sexual life in myriad ways. "The most common difficulties for women I see are loss of sexual desire, difficulties becoming sexually aroused or vaginal changes such as pain," explained Isabel White, a COSRT senior accredited psychosexual therapist who specialises in working with people who have or have had cancer.
Issues stem from both the physical and the mental repercussions of treatment. "It can be a physical origin such as treatment-induced menopause that’s very common after hormonal breast cancers, or mental health issues. Low mood and anxiety are two conditions found more commonly in cancer patients versus the general population and these have a significant adverse effect on sexual wellbeing." Body changes can have a huge effect too. "Hair loss, weight change or loss of body parts associated with eroticism can adversely affect body confidence and the ability to connect with people when being sexually intimate," Isabel added.
For Bronte, who was diagnosed with leukaemia aged 21, the physical toll of her illness made continuing her sex life with her boyfriend of two years really hard. "I was often exhausted when I was able to see my partner, or just really ill, and the last thing on my mind was taking my clothes off. With so many changes happening to my body I experienced a lot of body image and identity issues which made me hate myself a lot of the time and feel completely disconnected from what I saw in the mirror. This really impacted our intimacy because I simply didn’t feel comfortable in my skin, let alone feel sexy."
The practical elements of being ill were tricky to navigate, too. "We were both at uni so when I was diagnosed I went back to my parents' for treatment, which meant we were a three-hour journey away from each other," Bronte explained. Rediscovering her sex life has been a long process. "Three years later I’m still slowly rebuilding and discovering new interests and desires. As I discovered myself again and recognised my reflection I became more confident and the intimacy naturally followed. It did take an extremely long time for my libido to build back up and I’m so lucky to have a super supportive partner who stuck with me through it all."
Some cancer patients are advised to avoid sex altogether. Maria, who was diagnosed with leukaemia aged 17, was told to completely refrain from any sexual activity due to the risk of infection. "It was like a hypothetical chastity belt," she said. Single at the time, she found her libido had also completely diminished. "Previously I would think about romance and sexual activity a lot but that completely disappeared," she added. During this time she also worried about how she would date again. "I started to get depressed thinking about it and thought I wouldn’t be good enough for anyone again since I didn’t think I could ‘perform’ or live up to a guy’s expectations."
Kimia, now 30, also struggled with dating after suffering from non-Hodgkin lymphoma aged 21. "At first I was worried about dating again but as my confidence increased after coming out as bi, I thought, This is me, and if prospective partners act weird about my cancer history, then whatever. As soon as people see my scars, I tell them the full story," she explained. "Luckily, I’m now in a loving relationship with someone who doesn’t treat me differently," she added.
For some women, reconnecting with their sexuality after cancer is made harder by the drugs they are prescribed to prevent cancer from returning. Joon, who was diagnosed with breast cancer aged 37, has to take tamoxifen for up to 10 years. This very commonly prescribed drug induces early menopause. "It feels like your most intimate life – your skin, sexuality and intimacy with your partner – go out the window. You feel like an old woman," she told us. "I had a healthy sex life before but suddenly I didn’t want to have sex anymore. Vaginal dryness is also a real bummer."
Unlike male treatments (for example, Viagra), there are fewer options for women in terms of drugs that can improve sex life. Like so many areas of female health, the gap here is significant. "It’s harder to get funding for research into sexual difficulties in women versus men as a lot of money comes from pharmaceutical companies," Isabel points out.
In 2010, Isabel was appointed by the Royal Marsden in London (the UK’s top cancer hospital) as its first in-house psychosexual therapist – a position created in response to patient demand. Therapists like Isabel are available in some NHS hospitals but not everywhere or for everyone going through cancer. With cuts to NHS funding, these sorts of services are often the first to go. Alongside the need for greater sexual health resources, Isabel highlights the importance of more research into this area, especially from a female perspective.
The lack of knowledge in this field comes up again and again when I speak to women who have had cancer. Twenty-four-year-old Lynsey was surprised by how little information about contraception was provided when she was diagnosed with breast cancer at the beginning of 2021. As her cancer was hormonal she had to stop taking the contraceptive pill. "They make it really clear you can’t get pregnant during your cancer treatment but no one gave me much advice on alternatives. In the end I phoned the sexual health services, who suggested the non-hormonal coil," she explained. When Lynsey started chemo, she also struggled to find information about safe sex practices. "It’s suggested you use condoms because of the drugs going around your body but no one seems to really know whether that’s just straight after chemo or up to a week after," she said. "It’s concerning that there is not more research or information on this," she added.
Finding support can be life-changing. During her treatment for leukaemia, Maria had access to a women’s health clinic run by a nurse with whom she felt comfortable discussing her sexuality. "Although the information was catered to older female patients, it still gave me some confidence. If it wasn’t for that nurse’s advice I don’t think I would have the confidence to dive back into masturbation or dating."
Thanks to some women, the narrative around sex and cancer is hopefully set to change. "We need to talk about it so women don’t feel embarrassed and the medical community knows it's an important issue," Rebecca explained. As a producer at ethical adult filmmaker Erika Lust, Rebecca decided to use her position to change the current conversation.
"I wanted to make a film about cancer without death. Culturally we are 30 years behind where we are with cancer medically. We still see cancer as a death sentence and it’s just not the case," she said. After all, there’s an 87% survival rate for young people experiencing cancer. "Sex in society is one taboo, female sexuality is another taboo, put on top of that sexuality when [you have cancer] and it’s a triple taboo," she said. Inspired by her own experience, Wash Me is an intimate and hopeful portrait of a woman rediscovering her body and desire after cancer. The film aims to raise awareness of the intimacy struggles faced by people with serious illnesses while inspiring others who are going through cancer treatment not to give up on their sexuality but claim it back.
Joon also aims to shift the narrative with her platform sexwithcancer.com. Created with friend, fellow artist and former cancer patient Brian Lobel, it’s a sex shop, a resource for peer-led advice, a platform for artist work and a place to explore journeys around cancer that are harder to dive into. "We need to start thinking about cancer as a chronic condition like mental health or diabetes. We need to think beyond survival about how we live more fully as whole human beings," she explained. "Pleasure and intimacy are so much about life and what is the point in living if you are just surviving?"