Cancer treatment damaged my genitals and left me unable to have penetrative sex

Ellie Waters-Barnes, 23, is a medical student and lives in Stoke-on-Trent.

Here she tells her story and how being diagnosed and treated for cancer at the age of 14 changed her life forever.

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“Lying in bed next to my boyfriend, I felt sad and angry. Scarring and damage to my genitals, caused by cancer treatment when I was a teenager, prevented me from having penetrative sex. No matter how many times he assured me it wasn’t important, I couldn’t help but feel frustrated.

I was 14 years old when, in September 2015, I was diagnosed with rhabdomyosarcoma (RMS), a soft tissue cancer. A small lump on my left buttock grew and I became constipated, tired and had pain in my legs. It was only when I had trouble peeing that I told my mom, Samantha. I was really embarrassed before this.

My doctor diagnosed me with an abscess and I was sent for surgery. A few days after my operation, Mom approached my bedside and I knew from her shocked face that she was about to tell me something terrible. The surgeons discovered it was not an abscess – instead, I had an aggressive, fast-growing cancer. I was terrified and truly believed I was going to die.

For the next 18 months, normal teenage life was disrupted as I underwent grueling chemotherapy and radiotherapy. I lost weight and my hair fell out, I was exhausted and felt isolated, as I couldn’t go to school or socialize with friends or my twin sister Olivia, because my immune system was weakened.

A part of me no longer felt ‘normal’

I now know that my parents made the decision not to tell me that the treatment would likely leave me infertile. They thought I was too young to accept that, and I understand that. However, no one argued with me or them that my future sexual function may also be compromised. Maybe the doctors felt that because of my age it wasn’t appropriate.

In 2017, at age 16, I was in remission and was able to go back to school and see friends again. However, as my body healed, one part no longer felt “normal”.

I was very happy when we had sex. But it left me in pain, with swelling and blisters on my genitals.

My vagina was sore – even wearing tight pants or sitting for a long time could be uncomfortable, and it was painful if I tried to examine myself. My period stopped because of the chemotherapy, but even if I needed to use tampons, it would be impossible.

Chemotherapy put me into early menopause and although I was taking HRT, after doing some research I was sure the symptoms were due to this. In 2020 I saw a menopause specialist and was prescribed vaginal estrogen and within a few weeks I felt much more comfortable. The radiation therapy also caused stiffness and scarring, so I used vaginal dilators in hopes of being able to have sex when I found the right person.

‘Bumps and blisters’

In 2021, I started dating a guy I met on my gap year. I was nervous telling him what I had been through, but he was understanding and I was very happy when we had sex. But it left me in pain, with swelling and blisters on my genitals.

I was referred to a dermatologist, who diagnosed me with vulvar lymphangiectasia. She explained that due to the damage done to the area by radiotherapy, the lymphatic fluid wasn’t draining as it should, so anything that increased blood flow – like sex – was only making the situation worse.

We continued having sex, but I kept getting infections and was in a lot of pain. I had to accept that I would never be able to have penetrative sex, which was devastating. It was a huge blow to my identity, my confidence and sense of worth. I also felt guilty for worrying about sex when other cancer patients lost their lives. My boyfriend assured me that we could still be intimate, but in 2022 we broke up.

I had to accept that I would never be able to have penetrative sex, which was devastating. I

I’ve found that being in a relationship is a constant reminder of what I can’t have – a normal sex life. For now, I’m happily single and training as a doctor, and I believe I can be happy, childless and dedicated to my work. I would like to specialize in gynecology and use my experience to support other women and overcome taboos.

I am seeing a psychosexual counselor to address my sexual dysfunction and increase my confidence so far in the future. You rarely hear the words “cancer” and “sex” together, but treatment for one can have a devastating effect on the other, and guilt and embarrassment silence people.

If I meet someone else in the future, I will have to hope that they understand and are prepared to accept that a life with me will not include penetrative sex.”

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