Ellie is sitting on a bed, looking up and smiling.

Ellie on cancer treatment and the effect on sex and intimacy

Published: 14 March 2024

Ellie, 22, was diagnosed with Rhabdomyosarcoma (a soft tissue sarcoma) in 2015 when she was just 14 years old. The effect of her cancer treatment has meant that Ellie is unable to have penetrative sex and her fertility is affected. This has had a big impact on her mental health.

Ellie spoke to us as part of our We need to talk about sex and cancer campaign.

Meet Ellie

The pelvic radiotherapy Ellie had as a teenager has left her unable to have sex, as well as affecting her fertility. – this is life-changing information she has to share when dating.

Because she was technically a child, nobody told her how it would impact her sex life as an adult. This is something she is understandably sad and annoyed about.

For a long time, she felt so much shame and guilt because of the side-effects of her cancer treatment. Ellie now wants to raise awareness of the side effects of cancer treatment on sex and intimacy which she feels should be spoken about more often.

"It's so liberating actually being able to speak about these issues and shine a light on them now," she says.

For a long time, Ellie felt as if she should just shut up about it all. She is passionate about using clear, simple language when talking about sex and intimacy after she had to do so much herself to find what would help. For example, no one told her about dilators – she had to figure out how to get them and how they should be used.

"It's so liberating actually being able to speak about these issues and a shine light on them now."

Ellie says she is now an open book and is happy to talk about all aspects of this topic as a young woman. For example, she has to have treatment for some late effects of pelvic radiotherapy. The treatment involves 3 monthly injections to close off the leaking lymphatic vessels in her vulva. It is not fun and can be painful.

Ellie wants to bring more awareness to this debilitating condition. She is really happy to be asked personal questions and prefers this to people ignoring the realities of what life is like post cancer for her. Ellie cannot have sex because it causes the vulva to get really swollen and painful. It also increases the risk of cellulitis.

"My cancer treatment robbed me of many of the things that make women integrally unique."

"For a long time, I didn’t feel like a woman at all. My cancer treatment robbed me of many things that make women integrally unique. It made me feel like I was stuck in a child’s body and that nobody would ever take me seriously. It really affected my body image and self-confidence.

I’ve had to redefine what being a woman means to me. Before, I had a very narrow-minded view that being a woman was very much biological and dictated by having boobs, periods and being able to get pregnant. But being a woman actually means a lot more than that. And feeling womanly should not be dictated by biological standards, but by how you feel inside.

It’s important that women know they don’t have to fit into the mould that society tells us to. Your ability to conceive and how ‘sexy’ your body looks should not define your worth."