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 the cancer diagnosis and treatment from the age of 14 changed her life forever.

Eliie Waters-Barnes is now training as a medic

Ellie pictured after finishing her cancer treatment

Ellie before her cancer diagnosis pictured with mum, Sam

“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 just a teenager, had left me unable to have penetrative sex. It didn’t matter how many times he reassured me that it wasn’t important, I couldn’t help but feel frustrated.

I was 14 when, in September 2015, I was diagnosed with rhabdomyosarcoma (RMS), a soft tissue cancer. A tiny lump in my left buttock had grown, and I became constipated, tired and had leg pain. It was only when I struggled to pee that I told my mum Samantha. I’d been too embarrassed before then.

My GP diagnosed me with an abscess and I was referred for surgery. A few days after my operation, Mum approached my bedside and I knew from her shocked face that she was about to tell me something terrible. Surgeons had discovered it wasn’t an abscess – instead, I had a fast-growing, aggressive cancer. I was terrified and truly believed I was going to die.

For the next 18 months, normal teenage life was put on pause while I underwent gruelling chemo and radiotherapy. I lost weight and my hair fell out, I was exhausted and felt isolated, as I was unable to attend school or socialise with friends or my twin sister Olivia, because my immune system was wiped out. 

One part of me no longer felt ‘normal’

I know now that my parents made the decision not to tell me the treatment would likely leave me infertile. They felt I was too young to take it in, and I understand that. However, nobody discussed with them or me that my future sexual function could also be compromised. Perhaps doctors felt that, because of my age, it wasn’t appropriate. 

By 2017, aged 16, I was in remission and able to return to school and see friends again. However, as my body healed, one part no longer felt ‘normal’. 

My vagina was sore – even wearing tight trousers or sitting down for too long could be uncomfortable, and it was painful if I tried to examine myself. My periods stopped because of chemo, but even if I’d needed to use tampons, it would have been impossible.

Chemotherapy had put me into early menopause, and although I was taking HRT, after doing some research, I felt sure the symptoms were due to that. In 2020, I saw a menopause specialist and was prescribed vaginal oestrogen, and within weeks I felt much more comfortable. Radiotherapy had also caused tightening and scarring, so I used vaginal dilators in the hope I’d be able to have sex when I found the right person.

‘Swellings and blisters’

In 2021, I began dating a guy I met on my gap year. I felt nervous telling him what I’d been through, but he was understanding and I was overjoyed 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 vulval lymphangiectasia. She explained that, because of damage caused to the area by radiotherapy, lymphatic fluid wasn’t draining away like it should, so anything that increased blood flow – like sex – was only making it worse.

We continued having sex, but I kept getting infections and was in too much pain. I had to accept I’d never be able to have penetrative sex, which was devastating. It felt like such a blow to my identity, my confidence and sense of worth. I also felt guilty for caring about sex, when other cancer patients had lost their lives. My boyfriend reassured me we could still be intimate, but in 2022 we split up. 

I’ve found being in a relationship 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 may be happy child-free and devoted to my work. I’d like to specialise in gynaecology and use my experience to support other women and overcome taboos. 

I’m seeing a psychosexual counsellor to come to terms with my sexual dysfunction and increase my confidence to date 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 silences people.

If I meet someone else in the future, I’ll have to hope they’ll understand and be prepared to accept that a life with me won’t include penetrative sex.” 

Ellie was referred to a dermatologist, who diagnosed her with vulval lymphangiectasia