Six weeks before her final exams, Claire* was looking forward to the end of university and a summer of travelling. By the time the first exam arrived, something had drastically changed. “I called my mum sobbing and told her there was no way I could take the exams,” she tells me now, several years later. “I hadn’t done even an hour’s worth of revision. I just ate and slept and cried without understanding why.”
Claire’s GP at university diagnosed stress, yet on her planned trips abroad, nothing improved. “I was plagued by panic attacks. I felt like the world was crashing down on me.” On her return home, she visitedher local GP, who, unlike the previous doctor, immediately asked if she was on contraception. It was then that Claire made the link: a month and a half before her exams, she was first prescribed Cerazette, a common progesterone-only contraceptive pill.
The GP explained that depression is a known side effect of Cerazette, and she had seen it in other patients before. “She told me to stop taking it immediately. Within a week, the numbness began to lift and I felt my personality coming back. I felt hope for the first time in months.”
Claire is off the pill now, and in the past, this would have been the end of the story – especially since her GP “refused” to report her side effects to the yellow card scheme, which is used to collect information on medication’s unwelcome side effects.
But over the past decade or so, those who have experienced side effects – I’ll refer to “women” from here for clarity, but these issues can affect anyone with a uterus – like Claire have begun sharing their tales of contraceptive woe across forums, blogs, and social media.
#MyPillStory is a hashtag begun earlier this month by journalists Kate Bevan and Holly Brockwell to spark conversations around the Pill. In doing so, it aggregated Twitter users’ tales of pill disaster, from blood clots to personality changes. It makes for spine-tingling reading – especially for anyone who pops their own pill daily. Depression, anxiety, and an affected sex drive crop up in scores of the posts, while handfuls of woman say they experienced blood clots, strokes, acne, swollen legs, chest pains, nausea… the list goes on.
Depression, couldn’t stop crying, zero libido and suicidal thoughts, on 3 diff types. Never again, condoms for me! #MyPillStory
— Sigga Darling (@siggadarling) April 10, 2016
Best of #MyPillStory was when I stopped it
— jude (@napalm_noise) April 8, 2016
Of course, the problem with this type of “data” is that, well, it isn’t. The medical profession’s denial of women’s experiences is usually badly handled, is often unjust and unfounded, but can also be correct. A medication you take for years of your life will, necessarily, coincide with other health problems. It’s incredibly difficult to establish causation in many of these cases.
Meanwhile, anecdotal stories can cause panics, and more problems than they solve. A scare around blood clots and pills containing Gestodene and Desogestrel in 1995 led to an estimated £21m cost in maternity care and £46m in abortion provision, as many frightened women went off contraception altogether. As a result, women’s use of oral contraception fell from 40 per cent to 27 per cent between 1995 and 1997.
Sarah Kipps, a nurse and contraception specialist with the NHS at St George’s healthcare services, tells me there’s a danger that some women assume that generic “symptoms of life” are pill-related: “If you ask people on no medication what their symptoms are, they’ll have tiredness and headaches. This mirrors what some people say about the pill.” This is backed up by studies which show that around a quarter of study participants who have taken a placebo report side effects.
And yet women who do experience side effects are simply told to change their medication – which may explain why social media as a platform to share their stories has proved so attractive. These side effects scare women off hormonal contraception altogether, which, whether wise or unwise, is as much a product of an under-resourced sexual health system that tends to dismiss female pain as the health problems themselves.
I spoke to 20 women in depth about coming off the pill, and the choices they made afterwards. They added to the mix of stories about contraception clashing badly with anti-depressants, poor advice from doctors, unwanted pregnancies after coming off the pill, and an endless quest to find a method of contraception that actually works. The idea of choice was a key element: in a society increasingly concerned with wellness and what we put in our bodies, a daily dose of hormones begins to look less and less attractive.
As one woman told me, “As silly as I know this would be, I fantasise about stopping the pill and having normal periods, like a character in a Philippa Gregory novel.” Now, women can opt for different types of pills with different doses of hormones (WebMD has a good rundown), hormonal and non-hormonal coils which are inserted into the cervix, or injections. You can also, of course, opt for nothing at all.
Data shows that the use of oral contraceptives as a percentage of contraceptive methods has remained largely stable over the past decade. Tellingly, though, figures from sexual and reproductive health services also show a sharp upturn in Long Action Reversible Contraception, such as coils and implants, since 2010. Arm implants contain the lowest doses of hormones available, while non-hormonal coils are also available. The data shows the contraceptive choices of women who have visited sexual and reproductive health services (not including GP surgeries or pharmacies) during a certain year, so while they show trends, they don’t represent the whole UK population of women.
Lois is one of those datapoints. While at university she experienced “horrific migraines”, a common side effect of high-oestrogen birth controls she was taking. As a result, she opted for the non-hormonal coil, a T-shaped device inserted into the uterus: “It’s good for ten years, and the lack of hormones meant that I no longer got migraines from my birth control. I don’t ever have to think about it, unless I’m telling someone about how great it is.”
Perhaps the most interesting figure of all in this data comes under the heading “natural family planning” – or, in common parlance, unsafe sex. It hasnt topped 1 per cent over the past decade, but the numbers have increased over tenfold, from 500 women who visited sexual and reproductive health services in 2004/5 to 7,700 in 2014/15. (It’s worth noting that data collection methods have changed slightly over this period, which could partially account for the change.)
In the past, this decision may have been borne of religious convictions, but my interviewees suggest that secular women are using this method too. They are helped by fertility apps, which allow women to estimate the most fertile days of their cycle and take precautions accordingly.
Sarah, a sex blogger, quit the pill after reading a blogpost by a woman who, like Claire, escaped a cycle of depression and anxiety only when she went pill-free. She had noticed a decreased sex drive, and wanted to know what life without contraceptive medication would be like.
“I honestly didn’t realise how bad I felt until I started feeling better,” Sarah tells me now. “I was feeling depressed, but I never thought it had to do with the pill. Neither my therapist nor my psychiatrist ever brought it up.” Now, Claire uses condoms, but also a period monitoring app, Clue, so she knows to avoid penetrative sex on her most fertile days.
Natural Cycles is another such app that uses temperature measurements to predict fertility and marks days red, yellow or green depending on how safe it is to have sex. It recently hit headlines when a study claimed it is as effective as the pill when used correctly, based on a study of 4,023 Swedish women. Professor Kristina Gemzell, one of the authors of the study, said: “More and more women, especially in the age group of 20-30, tend to abstain from hormonal contraception and desire a hormone-free alternative. It is important to increase choice among contraceptives for women and inform them about their pros and cons.”
Unsurprisingly, these claims, and the publicity around them, are worrying for those working in sexual health and family planning. Dawn Stacey, a contraceptive expert and professor, tells me that she would guess the app is “not as effective as the pill”. This is based on the fact that the app suggests users log their temperature to monitor fertility, while nurses use a minimum of three indicators to predict fertility, including the consistancy of the cervical mucus and position of the cervix. Fertility planning was once taught in clinics, but is now thought of as too complex and risky – nurses would monitor a woman’s fertility for two or three months before hazarding a guess at a pattern.
“Plus, there are other factors that could impact determining your fertility,” Stacey adds. “Many women don’t have regular cycles until their mid-20s and ovulation can be impacted by stress, lack of sleep, or being sick. It doesn’t look like the app takes any of that into consideration.”
Sarah Kipps, a contraceptive nurse, adds that this type of natural planning “involves a lot of abstinence – you could be fertile for five days in a month”. In her eyes, “there’s a kind of complacency around contraception” as the pill’s introduction in the 1960s becomes a distant memory.
“People come in and see us, and they want to be natural. But natural means pregnancy. If you don’t get on with the pill, come and have a chat in the clinic – there are lots of other alternatives. If you don’t want to have children, you have to defeat biology. The pill defeated biology, but now there’s a backlash against it.”
Dr Raoul Scherwitzl, co-founder of the Natural Cycles app, says that temperature is “enough…to confirm that ovulation has happened” and that the app responds to irregular cycles, adding extra “red days” to “cover the uncertainty around the irregularities”.
Despite the risk, some women see this “natural” contraception as a way of reclaiming control. This seems especially common among women who went on the pill early and are now questioning its effects on their bodies.
Yara went on the pill aged 15, “because I went to the doctor with an irregular period. Looking back I’m pretty sure it’s because I was underweight, but the doctor didn’t spot that and put me on the pill. After that I felt pressured by boyfriends.” Within the past few years she went off the pill, then got an implant, and now uses a combination of the Clue app and condoms. “Clue is awesome,” she says. “It makes me feel in control of my body and tells me when I’m fertile. I’d be open to using it alone, except for my concerns about STIs.” Since coming off the pill, she has had a “massive mood boost”.
One woman told me she saw the pill as “the lesser of several evils”, which is probably a good expression of most women’s view of their choice of contraception.
There’s an ingrained, insurmountable biological unfairness throughout the contraception debate, since women, even as we near an age of male pills and longer-term contraceptive options for men, bear the brunt of the decisions, health effects and stress around contraception.
Marie* went off the pill following dramatic mood swings, but now, her new boyfriend is “a bit less forgiving” when it comes to using condoms. “He’s really keen that I use something else, so I’m currently looking.”
Zoe* started out using Cerazette in 2012, which she says sent her “a bit loopy”, tried the coil, which was “incredibly painful”, then returned to the pill. Her boyfriend was unwilling to use condoms, and throughout, “I certainly felt that finding the right method of contraception was in my hands only, not a shared endeavour.”
These long, winding medical histories, reeled off at a moment’s notice, are common among women who use contraception. In this sense, to be fertile is a health condition which many women struggle with for much of their lives.
Meanwhile, society contains a frustrating contradiction. Women’s bodies are mythologised and sexualised, and yet discussion of their intimate workings are taboo in many forums. In 2010, a student at Dartmouth College in the US handed out nearly 2,000 hand mirrors to women so they could see their own genitalia, perhaps for the first time. A student paper called her campaign “disrespectful” to women of faith – and yet one has to wonder what motivates a religion to hide a woman’s genitalia from its owner. Other students, meanwhile, saw the mirrors as an “in-your-face show of sexual profligacy”.
Meanwhile, we ask women to make decisions about their uteruses which could affect their mental and physical health for years to come, based on a dearth of support and information which begins in the schoolroom and continues in the doctor’s office. “I was just shown some leaflets” was a common refrain among the women I spoke to. The online movement around contraception is a sign that advice and guidance serves aren’t working offline.
So what’s the solution? Perhaps the most positive story I heard throughout this research came at the conclusion of one of the most distressing. Lisa*, whose pill interfered with her anti-depressants, eventually decided to get a coil. “My GP, who I don’t think had ever put in a coil before, tried to install a coil and did it wrong. It was one of the most traumatic medical experiences I have had – even as someone who lived in and out of hospital for two years for other reasons.”
She then found the Margaret Pyke Centre, a contraceptive and reproductive clinic in King’s Cross. The centre offers one-on-one appointments where women can discuss their decision, and Lisa says they “took me through all my options, with models [of the coil] which i could play with and loads of proper information”.
She opted for the coil again, which surprised me given her previous experiences – even a standard coil insertion procedure can range from uncomfortable to painful. So what changed her mind? “If you go to Margaret Pyke on your own for the operation, there is quite literally someone there to hold your hand.”
In an age of shrinking health budgets and ever-more confused messaging around women’s bodies, safe contraception chosen by women with access to all the information should be a right, not a privilege. Meanwhile, continued research into the pill’s side effects should be a much higher priority, as the hormonal dosages may be lower, but the drugs have developed little since the 1960s. The male contraceptive pill has been hampered in its development by the fact that 63 per cent of men say they wouldn’t take it if it caused side effects like weight gain and acne; side effects which most women would consider par for the course, compared to the far worse effects some experience.
The pill and the general normalisation of contraception in the UK helped shrink families, ratchet up gender equality, and increase prosperity across the second half of the twentieth century. Yet since then, progress seems to have slowed to a crawl.
“The lack of research into contraception’s side effects is unreal,” Yara says. “But it’s such a fundamental part of being a human with a uterus. To be able to not be pregnant.”
*Most names have been changed.
You can join the fight to save the Margaret Pyke Centre here.
This article appears in the 04 May 2016 issue of the New Statesman, The longest hatred