When IUDs Go Terribly Wrong
As IUDs like the Mirena and Paragard rise in popularity, some women say that they were not properly informed of the side effects—with disastrous consequences.
Illustration by Eleanor Doughty
There comes a time in many a woman's life when she waves goodbye to slimy condoms and welcomes the easy intimacy that comes with other forms of birth control. Since its arrival in the 60s this has by and large been the pill, which is used by nearly a quarter of women of childbearing age. But the IUD (intrauterine device, also known as the contraceptive coil) has also seen a dramatic rise in use in the last ten years, with Planned Parenthood reporting a 75 percent increase in IUD use among its patients since 2008.
There are two types of IUD: the non-hormonal copper IUD like Paragard, and the hormonal IUD, widely known by brand names such as the Mirena, Skyla, or Liletta. Both have been touted as miracle alternatives to the pill for those who cannot tolerate hormones—even IUDs like the Mirena are publicized as a localized dose that causes fewer hormonal side effects.
But some women—and a leading gynecologist—say that their experience of the IUD has been disastrous.
Copper IUDs and ectopic pregnancy
Saskia Longaretti, a 27-year-old musician, got a copper IUD three years ago. In January, she found herself lying on the operating table to remove a ruptured fallopian tube and the fetus that had developed inside it.
She'd initially gone to her GP with an abdominal ache, a period that had been ongoing for five weeks, and a large, hard lump at the base of her cervix. Her GP chalked up her stomach issues to stress-induced irritable bowel syndrome.
But then the pain built to unbearable levels and, sitting on the toilet, she felt a small, fleshy mass fall out of her. In the emergency room, doctors realized she was miscarrying an ectopic pregnancy, where a fetus develops outside of the womb.
After her ordeal, Longaretti's GP called her to find out what had happened. "She said, 'I'm so sorry, I can't believe I didn't notice you were pregnant. I thought because you had the coil, you couldn't be.'" The doctor was mistaken—copper IUDs do not prevent ectopic pregnancies, where the fetus develops outside the womb.
Of course, IUDs can be hassle-free for many women. Its great advantages are that women do not have to use a condom or remember to take a pill, and once you get one inserted, it can be left for three to ten years. Dr Sarah Hardman of the Faculty of Sexual and Reproductive Healthcare at the Royal College of Obstetricians and Gynecologists, explains that an IUD is recommended as one of the best ways to prevent pregnancy: "The contraceptive failure rate with typical use (the way women actually use it) of oral contraception is about nine percent. This contrasts with a failure rate of less than one percent for intrauterine contraception."
Despite its benefits, an IUD can be unsuitable for the minority of women for whom it causes excessive pain. A common thread through many women's horror stories of the coil is that they or their doctors dismissed their pain as negligible or worth the payoff of not getting pregnant. Instead, many women end up tolerating the unpleasant side effects for a long while—with unfortunate results.
Painful insertions and terrible periods
Rosalind Stone, a 25-year-old writer, endured debilitating pain and sheet-drenching periods from her copper IUD for six months before she managed to get it removed. She'd had depression while on the pill, and was determined not to use hormonal contraception anymore. In her initial consultation, she was told to expect pain for the first few months in her initial consultation. She continued with the coil, reasoning: "I'm paying for my happiness with physical pain, so that's OK."
When Stone decided that enough was enough and went to get the coil removed at a sexual health clinic, a doctor found it had gone missing. He deduced that it had been expelled from her vagina and no removal was necessary, dismissing her lingering pain.
Stone convinced the reluctant doctor to schedule an ultrasound. The IUD was revealed to be still inside her.
When her next doctor removed it, she was shocked. She said that Stone should never have been fitted with such a large IUD for her very small cervix, which explained why her initial insertion had been excruciating. While cervix size does not affect whether an IUD works or not, women with smaller cervixes may find the insertion process more painful.
In the US, objections to the IUD has been more vocal, perhaps because of the collective hangover from the 70s of Dalkon Shield, an IUD which injured hundreds of thousands. Eighteen women died from sepsis. The Dalkon Shield was subsequently taken off the market. IUDs have undoubtedly improved since then, but it doesn't mean that the technology is totally perfect. Between 2000 and 2013, the FDA received 70,000 complaints about the Mirena. As of November 2015, manufacturer Bayer was facing about 3,000 US lawsuits involving spontaneous uterine perforations from the Mirena.
In the UK, pay-for-performance incentives for doctors from 2009 to 2014 aimed to increase the percentage of women using long acting reversible contraceptives (LARC, which include copper and hormonal IUDs, implants, and injections). They did this by linking doctors' incomes to targets focused on providing information to women.
Medical guidelines from the National Institute of Care and Excellence (NICE) also stress the relative cost effectiveness of LARC (such as the IUD) when compared to the pill, and recommend that uptake should be increased. When Stone had her coil fitted, the doctor mentioned that he was competing with other doctors to reach higher years' worth of contraception prescribed. Despite her small size, he had encouraged her to take the bigger coil, which offers a higher number of years' protection.
When contacted for comment, NICE responded with the statement: "This guidance does contain recommendations on the coil (or copper intrauterine devices), however we do not express an opinion regarding the size of the coil except the following: 'The most effective IUDs contain at least 380 mm2 of copper and have banded copper on the arms. This, together with the licensed duration of use, should be considered when deciding which IUD to use.'"
Personally, I would never insert it in a woman who had never had children before, because of the risk of infection.
Until relatively recently, the coil has been recommended only for women who have had a baby. After childbirth, the cervix is bigger, allowing for easier insertion. Dr Hardman recommends the coil for women at any age: "The insertion procedure can be uncomfortable and for a minority of women, painful, but is a minor precure, is quick and is well tolerated by both parous and nulliparous women [those who have and have not given birth before], including young people." However, one study showed that over 70 percent of women who had never had a baby discontinued use of a certain Paraguard model within one year, mostly because of bleeding and pain.
Consultant gynecological surgeon and Journal of Obstetrics and Gynaecology associate editor Dr Ayman Ewies has written several studies about the hormonal Mirena, the most widely used coil. "Personally," he says, "I would never insert it in a woman who had never had children before, because of the risk of infection."
In a 2007 survey, Dr Ewies found that nearly half (46 percent) of 160 women with the Mirena had it removed within three years, many for hormonal side effects from weight gain to depression to lack of sexual interest. However, Dr Ewies says doctors are told in training that the hormones in the Mirena act only locally on the womb. NICE guidelines, despite acknowledging that nearly 60 percent of women prematurely remove the hormonal coil—most commonly for unacceptable bleeding and pain—only acknowledge that an IUD can cause small mood and libidinal changes.
But in his experience, this is not true: "Hormones are certainly absorbed into the blood, and there is no difference between inserting the Mirena or taking progesterone tablets. They have the same effects on the body and this issue is not clarified to women." When women complain of hormonal side effects to their doctors, they can be disbelieved: "They get told it can't be the Mirena, which causes them distress and they keep going backwards and forwards to see their healthcare provider. It's very frustrating."
The Mirena website does acknowledge that hormones can enter the bloodstream. It states that the IUD "contains a progestin hormone called levonorgestrel that is often used in birth control pills. Because Mirena releases levonorgestrel into your uterus, only small amounts of the hormone enter your blood." It also warns that "between five and ten percent" of Mirena users may experience side effects such as "depressed mood," while five percent may also experience "decreased sex drive," among others.
When the medical establishment sidelines the real—and sometimes debilitating—effects of contraception, it compromises the credibility of women's perceptions about their own bodies. Women need to know about all the potential side effects of birth control, so they can make full and informed decisions about their bodies. One thing's for sure: When it comes to modern day contraception, it seems that women's options are still severely lacking.
Corrections: This article was edited to clarify points made in the piece, and to insert more information about IUDs as well as subheaders.