When Julia was 12 years old, her mother, who was in her early 30s, died of ovarian cancer. The following year, Julia was raped.
Now 35, she is terrified of developing gynaecological cancer like her mum. But as a survivor of sexual violence, she's also terrified that going for a smear test – the best protection against cervical cancer – will force her to relive the trauma of rape.
She's not the only one. Research published today by Jo's Cervical Cancer Trust, in partnership with Rape Crisis and My Body Back Project, found that nearly half of survivors don't attend cervical screening tests as a direct result of their experience. Another quarter of the 131 survivors they surveyed said they've put off going for their test for the same reason, while only 15% regularly attend when they're invited.
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The potential ramifications are huge. One in five women aged 16-59 has experienced some form of sexual violence in her lifetime. If almost three-quarters of those women delay or avoid their smear test, it's fair to assume they're at an increased risk of developing cervical cancer. And many of them are painfully aware of this.
"I'm a radiographer working in a busy oncology hospital, and I've seen what happens when people don't go to screening tests or ignore their symptoms," says 40-year-old Kate, who was raped in 2013, just after having her smear test.
When her next screening invitation came, three years later, Kate says: "I felt sick. I genuinely believe cervical screening saves lives, and I wasn't prepared to let [my attacker] jeopardise my health; that felt like another way for him to win. It was too important to not go, but I knew I would find it difficult in a way I never had before."
Over the course of a decade, Julia had seven "horrible" failed attempts at going for her smear test, and says: "I cannot tell you the trauma this has put me through. I felt like a failure and blamed myself. I thought if I hadn't let myself be raped, I would be normal and I would be able to do it."
For many survivors of sexual violence, the thought of going for a smear test understandably triggers serious anxiety. "I worry the procedure will bring up bad memories of sexual assault, especially if it hurts or causes bleeding," says Sam*, who was raped eight years ago.
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Twenty-eight-year-old Megan* was raped by a boyfriend at the age of 16, and again by a colleague when she was 22. When her first screening invitation arrived, she decided to ignore it. "I knew having a smear test was important for my health, but I was scared the GP would make me do stuff that I didn't want to do. I didn't want to tell them what had happened, and I shook at the thought of it," Megan says.
While there are obvious parallels between the physical conditions of rape and cervical screening, for many women the most triggering thing is feeling out of control. "I dreaded the thought of being so exposed and so vulnerable," says Kate.
"I wasn't worried so much about it bringing back memories of the rape itself, but the police examination afterwards; that horrible feeling of being scrutinised by a police doctor. The circumstances are very similar – bright lights, legs akimbo, someone you don't know looking at you."
When she did summon up the courage to go, Kate explained her situation to the nurse. "She was lovely, and very patient, but she asked me if I had a normal sex life – like if I can cope with a penis, I should be able to cope with a speculum," she says.
"I don't think rape is anything to do with sex, it's more about power. In a screening scenario, it's the person with the speculum who has the power, so I think there's a fundamental misunderstanding among healthcare professionals about rape and its dynamics," Kate adds.
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"Comparing the loving, intimate times with someone I love and trust to a smear test, just because they both involve something being put in me, is infuriating. There's so much more complexity to it than just 'she doesn't want things inside her'."
For Sam, finding a supportive and understanding GP at her local surgery has helped. "I still avoid it, or end up cancelling in a panic, so I'm usually several years late by the time I get the test done. But when I eventually go, I always book a double appointment with my GP, who knows my history, so we can take our time," she says.
Similarly, Megan finally managed to go for her smear test after discovering the My Body Back clinic in east London – a sexual health service set up specifically for survivors of sexual violence.
"There was no time pressure, and I felt really comfortable. All of my needs were considered and, for the first time in my life, I wasn't just a body. There was even a special psychologist who was there to look after my head and rescue me every time I came near to having a panic attack," she says. "My Body Back made me feel like a whole person, who had feelings, a brain, and my own needs."
With cervical cancer described by the World Health Organization as one of the deadliest but most preventable cancers for women, it's horrifying that cervical screening attendance in England is at its lowest rate in 20 years. But for millions of women, the reasons are far more complex than simply "embarrassment" – and healthcare professionals have a vital role to play in making smear test appointments a safe and supportive space.
Information and advice for survivors of sexual violence and healthcare professionals is available from Jo's Cervical Cancer Trust.
*Some names have been changed
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