If you read most official medical advice, you’d be forgiven for thinking that getting a contraceptive coil (IUD/IUS) fitted is no worse than a routine vaccination.
The fitting itself should take “no longer than five minutes”, states NHS advice. The word “uncomfortable” is widely used to describe the sensation experienced, while popping a couple of painkillers is touted as all you’ll need to recover from the procedure.
For some women, the description matches the reality. For accountant Lucy Cohen, however, the experience was a far cry from her expectations.
“It was an absolutely horrific experience...my expectations weren’t managed.
“It was a very intrusive experience and I felt quite violated by the whole thing, it was traumatising,” she says.
Later, lying with a hot water bottle clutched to her stomach, Lucy took to a Whatsapp group chat of female friends to relay what had happened.
To her surprise, two of her friends responded with broadly similar stories of agonising, unbearable pain during their coil fittings.
Lucy was shocked, she explains, because the group chat was “such a small sample size”, yet contained three women who’d all had negative fitting experiences.
In a bid to see whether this was a simple fluke or a wider trend, Lucy took to social media and launched a survey asking for women to share their experiences of coil fittings.
Within days, the survey was met with an outpouring of responses from women relaying toe-curling stories of extreme pain during fittings and removals, receiving attention and shares from writers Caitlin Moran and Caroline Criado Perez, the former of whom shared her own story of agony during her fitting.
Lucy, as it turned out, was far from an anomaly. As a non-hormonal, long-lasting contraceptive, the coil is an increasingly popular choice for women in the UK, yet, until now, the pain associated with getting them has been largely swept under the carpet.
Attracting over 1,300 responses, Lucy’s survey saw 95% of women saying the procedure was painful, while well over half - 60% - rated that pain in the top four tiers set out in the questionnaire. Around 75% said they did not feel adequately prepared for what to expect.
Meredith Whitely, aged 44, is one of those 60% who has experienced unbearable pain during a coil fitting
“I was warned it might be a bit uncomfortable...I almost fainted when they put the IUD in, my blood pressure dropped and every time I tried to sit up I almost passed out. I had no warning this was going to happen,” she explains.
On returning to have a new coil fitted, she adds, the pain was even worse.
“The actual removal was unbelievably painful - so much so that my body spasmed and they couldn’t get the new IUD in...the doctor tried three times and eventually had to give up.
“It was a horrible experience that left me feeling in a state of shock,” she says.
It’s a story Lucy says she’s now heard a “depressing” number of times through her survey.
“There were a minority of people saying it was absolutely fine, but some of the symptoms people responded with were fainting, crying, screaming, sweating and shaking.
“This isn’t something we should have to go through,” she says.
Lack of information
Inconsistency is one of the main themes to have emerged from Lucy’s survey, with huge variations in the advice and pain relief options offered to women across the country.
This lack of clear, realistic information available on the possible pain and side effects associated with fittings and removals is an “ethical issue”, says Lucy, questioning whether “full consent” to the procedure is possible without this.
In her own case, it was a tilted cervix that made the procedure especially painful, yet this was not an issue she was aware of until the day of the fitting.
“I had no idea I had a tilted cervix and that this might present an issue...sure if you’ve had a smear test that information should be available to you,” she says.
Lucy further points out a disparity between the way in which coil fittings are delivered when compared to similarly invasive procedures like colonoscopies, with the latter usually performed in a hospital and offering sedation or gas and air as pain relief.
“Why is such an intrusive and painful procedure done behind the curtain in your local GP’s office and you’re just expected to drive home with a paracetamol and be okay?” she asks.
Women expected to ‘grin and bear it’
Underlying this lack of information and preparedness is a “cultural acceptance” that women “just have to grin and bear it - that experiencing pain is part of being a woman”, says Lucy.
This ignorance to women’s pain extends beyond coil fittings, she says, with women now coming forward with stories of undergoing hysteroscopies without pain relief, while women with endometriosis face an average of 7.5 years’ wait to be diagnosed in the UK.
Though Lucy has been appalled by some of the testimonials she’s received, she says that the response from outreach she’s made to the medical community has been positive, with a number of health professionals keen to improve the coil experience for women in the UK.
Improving this experience goes beyond reducing pain for individuals, says Lucy, pointing out that failure to adequately communicate the risks and realities of fittings can create a trust problem between doctors and patients.
“In my survey, 71% of women said their expectations weren’t managed in terms of what to expect from the fitting. They may now have a trust issue.
“They could be hesitant to reach out for help in scenarios where it could potentially be life saving.”
To sign Lucy’s petition for better pain relief during IUD insertions, follow this link.