Like many women, Leanne hates having a smear test – to the extent that she would rather let pre-cancerous cells develop than go through with one.
Her reasons don’t involve pain or discomfort. She was raped as a teenager and the test is too reminiscent of her ordeal.
She is not alone. For some rape survivors a smear test is not just stressful; they fear it could trigger unstoppable and violent memories.
When Emily-Rose went for her smear test, the cold speculum wasn’t simply uncomfortable for her. It jolted her back to when she was raped six years ago. “Part of the attack involved metal kitchen objects,” she said.
Recent statistics show around 20 per cent of women do not reply to repeated invites for a smear test. Now, for the first time in the UK, possible connections between sexual violence and non-attendance of cervical screening are being discussed.
“As soon as I felt that cold metal inside of me I was back there. But it was a smear test and I had to have it. I didn’t know I had the right to insert the speculum myself, that might have helped control the flashbacks,” Emily-Rose told me. Weeks later a letter informed her the test results were abnormal. A LLETZ procedure was required, which involved cutting out the area of the cervix where the abnormal cells had developed.
“It sounds a terrible thing to say, but if I had to go through it all again I would rather risk getting cancer,” said the 40-year-old. “The smear test, the procedure, it all triggered memories of the rape. My personality changed after the tests. I was jumpy, panicky, I couldn’t leave the house for a month. I stopped work, I’d spiralled into depression. I had cried quietly throughout the procedure, no one asked me why. I was another procedure to the doctors.”
Leanne is approaching her thirtieth birthday and is studying midwifery. She says the letters she receives “threaten” her that she will be registered as having refused smear testing if she doesn’t attend. She closes off from them, and when she does go to the doctor for asthma medication she always says that she is having her period.
“I’ve had more periods than anyone in the world,” she laughs. “After [the rape] I dropped out of everything. A smear test will mean flashbacks, and I’ll lose everything like before.
“If I let pre-cancerous cells develop there’s a low chance I might get cancer. If I go for a test, there’s a very high chance I will plummet in my head. So, do I want to be safe in my body or my mind?
“I don’t want cancer. That bastard took enough from me, I don’t want him killing me too. My mum’s sister had cervical cancer, but I keep telling myself she was in her fifties with two children.”
According to cervical cancer charity Jo’s Trust, it is the most common cancer in UK women under 35. Annually around 1,000 women die from it, but free NHS cervical screening is estimated to save 5,000 lives a year.
Two years ago, nurse researchers Louise Cadman and Lesley Ashdown-Barr became the first in the UK to examine the issue in women who had a history of sexual abuse.
Their findings show over 20 per cent of the women who reported a history of sexual abuse had not ever attended testing. Of those who had attended, a notable proportion were not doing so regularly – the number was significantly higher than in the general population.
They said the implicit lack of control involved in testing, the risk of it triggering painful memories, and “parallels” between the abuse and the test all contributed to avoiding smear testing.
For this article, nineteen women who have experienced sexual violence were interviewed. They repeatedly mentioned that “the language of control” was used in health care settings, cuttingly reminding them of their experiences.
Sarah, who is in her early thirties, likened her nurse’s “instructions” during cervical screening to the way her rapist had spoken to her.
She said: “[The nurse] said to me “Put your leg here” and pulled it forward. It was pretty similar to what he had done – “put your leg here” and then pulling me any which way he wanted. Then she said “If you do what I tell you to, it’ll be over quicker for you.” I couldn’t believe it, she was echoing everything he was saying. I blacked out, I couldn’t do it.”
Other women said being told to “relax” by nurses was unwittingly parroting what their rapists had said during the ordeal, making relaxation impossible.
“I would like to go somewhere where I don’t have to explain myself,” said Emily-Rose.
“I want a place where I can walk in and they know why I’m there, and I am in control. For me, a small thing like aromatherapy would make it easier. Smell would be an instant hit to the brain that would ground me away from my memories. I want to be asked things like if I want the door locked, or the window open. I want control of my environment.”
Others mentioned their choice of music playing in the background, being able to put pictures up in the room, changing the colour scheme with decorations, having massage before and after, and an initial session to build trust and discuss what phrases, positions, or touch may trigger memories.
One woman wanted “trial runs” – meaning four or five sessions building up to completion – so she could get flashbacks under control at each stage.
Currently the My Body Back project, which focuses on sexual health for survivors of sexual violence, is working with NHS sexual health centres in north-west London to pilot the UK’s first monthly smear testing clinic for women who have experienced sexual violence. It aims to be running within the next year.
“It’s an emotional experience, not a physical one,” said Leanne.
“When the NHS records me as refusing a smear test, I am being blamed for being raped again. I am not refusing a test that could save my life, something else is stopping me. No one has ever asked me what that is.
“They assume I’m worried about the pain. That is the least of my worries. I have to pick between my mental health and my physical health. I’ve chosen to keep my mental health, but I want both.”
Follow @mybodybackproj on Twitter, for sexual health support for survivors of sexual violence