Contraceptive horror stories – why do we ignore them?

27th October 2017

By Imogen Robinson

After her second child was born, 39-year-old Mary-Ann, an accessory designer, got the copper coil fitted as she wanted a form of contraception that didn’t involve hormones. The copper coil, or IUD, is a small T-shaped device, made of plastic and copper, which is inserted into the womb and prevents pregnancy for up to ten years.

But when Mary-Ann went to have to have her coil removed when it stopped working, her GP was unable to locate it. After “several attempts” with “different tools”, which left Mary-Ann in a considerable amount of discomfort, her GP had to give up and sent her for a scan. The scan showed the coil had dropped down in her womb, so Mary-Ann was referred to a gynaecologist for removal. No one had sent the gyno the scans from the hospital however, and Mary-Ann was subjected to another painful and invasive half an hour of “another health professional sweeping blindly about my womb”.

The gynaecologist couldn’t locate the coil either, and Mary-Ann is due to have it removed, under general anaesthetic, in November. In comparison with others, this story of a painful, invasive, and time-consuming experience is fairly mild.

A few months back we published an article, written by a doctor, detailing the long-term side effects of the copper coil, and their likelihood of occurring. When we posted this article on social media, the comments that began to appear were absolutely horrifying.

“The pain never went away. I had awful cramps down there, and now I’m stuck on what to do next,” one woman wrote. “I’ve had thrush from the constant bleeding and having to use pads and tampons all the time,” said another.

There are more, and they are worse. One woman even wrote, “There’s a 1-2 in 1000 chance of the coil perforating the uterus. Well that happened to me. I expressed my concerns as I was in pain right from the start. Three days later after numerous X-rays and scans, being constantly pumped with morphine and antibiotics, it was found via keyhole surgery…lying behind my liver.”

Of course, with any medicine, you are only ever going to hear the horror stories. However, wouldn’t the responses that this article generated, and the volume of them, surely be enough to make anyone think twice?

When we go on contraception we are, of course, dutifully talked through the potential risks. 1-2 in 1000 (although the NHS website states less than 1 in 1000) doesn’t sound like a lot, but given an estimated 140,000 women a year have a copper coil fitted, that’s 140 women who stand to be hospitalised because of it.

Since they were launched, the copper coil, and the Mirena coil, or IUS, a similar device which pumps low levels of progesterone into the womb, have not been short of controversy. In 2012, mistakes made by GPs when fitting contraceptive coils led to some women becoming pregnant, some suffering from internal damage, or some mistakenly having a coil fitted when they were already pregnant. The Medical Defence Union studied 98 lawsuits brought against GPs between 2002 and 2011, of which 16 even involved a family GP failing to remove one coil before inserting another.

At the time, Dr Clare Gerada, chair of the Royal College of GPs, was quoted in The Guardian, stating these errors and problems were rare. She added, “IUDs are a safe, effective, and reversible contraception that could be more widely promoted.” Of course, she is right. But equally one can’t help thinking if a piece of plastic was inserted through a man’s genitals, with the risk it may perforate his internal organs, would it still be advocated by doctors across the country? Why are women setting the bar so low for their own comfort?

Alice, a 23 year-old marketing executive decided to get a Mirena coil after starting a new relationship. She was advised of the risks and given pamphlet after pamphlet, but says the benefit of not getting pregnant far outweighed any of the side effects for her. “You could have told me I would turn into an alien and I’d still have thought ‘yeah but I won’t get pregnant or have to think about it’,” she says.

Indeed, everything will of course work differently for different women, and statistically, as opposed to anecdotely, the risks of anything bad happening to you with an IUS or an IUD are extremely low. For every horror story, there are hundreds of success stories that you simply won’t hear about.

“I think people take risks because they want to find the method that best suits them,” says Dr. Diana Mansour, vice president of the Faculty of Sexual and Reproductive health and head of the integrated sexual and reproductive health services for Newcastle upon Tyne. “It’s not for me or any other doctor to make a decision for someone, and people do weigh up the risks and benefits for themselves. But obviously women need to be informed of all their choices.”

Some women, however, state they felt pressured or lured into taking a certain type of contraception, with Alice stating that while she originally wanted a copper coil, she felt pressured into getting a Mirena coil. A Daily Mail article from 2015 even suggested that doctors received money to insert coils, and were keen to press them upon people as they had to fit a minimum of one a month to ensure they were still legally allowed to fit them.

Not all of this is strictly true however, and in fact, with cuts to services, surgeries stand to make a loss, originally, from actually fitting someone with a coil. “Of course you would want a doctor who is doing at least one fitting a month,” says Dr. Mansour. “You wouldn’t want someone fitting one who wasn’t doing it regularly. Surgeries also have to buy their own kits for doctors, and the money they get from doing a fitting doesn’t even cover the cost of the kit, nor the time taken out of their clinic time.”

On top of pressure, however, women also state that they feel their worries, if they decide they no longer want a form of contraception because of side effects, simply aren’t listened to by GPs. Vicky, a 32 year old mum who runs parenting blog Fabulous Mummy, got the Mirena coil on the advice of her German gynaecologist aged 21. However, three years later, and back living in the UK, Vicky developed serious problems with the Mirena coil. “I developed severe acne, had weight gain, I was no longer absorbing my thyroid medication effectively, and I developed mood swings and anxiety. I went to my GP, who wasn’t concerned, and was even a bit dismissive of my worries.” No longer happy with the coil at all, Vicky had it taken out and went back on the pill.

“Contraception should be under a womans control,” says Dr. Mansour. “However there are reasons why a doctor can’t remove it on the spot, if they have very recently had sex for example. But looking at the problem, and if it is truly caused by device, and if it is safe to remove it, we can.”

Anecdotal stories of side effects suggest that many dissatisfied customers do try and get them removed before their time if up. After six months with her coil, Alice started experiencing pain after sex. Around this time she also developed severe scalp issues, and her PMS became “a living nightmare”, something she hadn’t experienced before. After a year, Alice decided that she “couldn’t live like that any more”. She did some of her own research, she discovered her scalp problem could possibly be caused by her birth control, and now she is due to get her coil removed.

Statistics abound about “high” rates of discontinuation of Mirena coil use. One article summarising different studies states, “The high discontinuation rate suggests that women are not given full information before insertion and/or healthcare professionals underestimate the rate of adverse effects.” In fact, however, reviews of statistical studies like this don’t always paint a true picture.

“If we look at overall acceptance rates of different methods of contraception, the two which are most accepted are the IUD and the IUS,” says Dr. Mansour. “Although you hear horror stories, continuation is pretty high with these methods. I think with the IUS, it has the highest continuation rate, I think at about 70% over five years.”

Despite this, if risks include actual perforation of the womb, why, from a doctor’s perspective, are they happy to prescribe something with such a risk? “In every 999 fittings, there won’t be an issue, and on the extremely rare occasion there is a perforation, it won’t affect fertility,” says Dr. Mansour. “As with all of these things, there are risks, and these should be discussed at the time of fitting. However, we fit a lot. I fitted two this morning, and one lady couldn’t believe how easy it was – she had been worried by what she had read in the press. That’s the problem; you don’t hear the real positives.”

Indeed, Dr. Mansour cites a survey of which type of contraception doctors, and doctor’s partners used for contraception, a third reported using the Mirena coil. “That speaks for itself,” she says. Acknowledge the risks of course, but also acknowledge the benefits. And if you have a form of contraception fitted, you can always, always go and get it removed if you don’t like it.

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Imogen Robinson

Deputy Editor, The Femedic

Imogen joined The Femedic after working as a news reporter. Becoming frustrated with the neverending clickbait, she jumped at the chance to work for a site whose ethos revolves around honesty and empathy. From reading articles by doctors to researching her own, and discussing health with a huge variety of women, she is fascinated by just how little we are told about our own bodies and women-specific health issues, and is excited to be working on a site which will dispel myths and taboos, and hopefully help a lot of women.