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Believing Women Means Believing Their Pain

A notoriously dangerous birth control device reveals the extent to which the medical establishment disbelieves women’s pain

Sady Doyle
Apr 16, 2018 · 5 min read
Melissa Davis Gilbert with her husband before her surgery in 2017. Gilbert has had the Essure device for about 10 years, and her symptoms — pelvic pain, fatigue, rashes, joint swelling — have gotten worse. In deciding to remove the device, it would mean she would have to get a hysterectomy. Photo by Katherine Frey/The Washington Post via Getty Images

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For years, women warned each other not to use Essure. The birth control device — which was restricted and given a rare “black box warning” last week by the FDA — has been linked to a plethora of health problems, from fatigue to chronic abdominal pain to death. The FDA has received more than 26,000 complaints and reports of eight adult deaths linked to the device. The device has broken and left metal shards embedded in patients’ uteri. It has caused pain so severe that one woman told NBC News she used to weep in her sleep.

For a long time, the only way to have a frank and informative discussion about any of this was to talk to other Essure patients or log into a self-created online support group, like Facebook’s Essure Problems. Doctors were aware of the potential side effects, but, the FDA found, they weren’t actually informing patients about them, outside of handing them a pamphlet.

Essure has been on the market since 2002. Despite years of women telling stories about the catastrophic side effects they’d experienced, and even petitioning to have it taken off the market entirely—something some women are still doing: “We don’t want this offered as an option to any woman,” Lisa Saenz, whose uterus was perforated by the device, told NBC—it has taken nearly 20 years for their voices to have an effect.

In the #MeToo era, the call to believe women has become ubiquitous. It’s used, quite rightfully, in the context of sexual assault and harassment, where our tendency to dismiss women’s accounts of the harm they’ve suffered can give active cover to rapists and harassers. But our tendency to dismiss female survivors springs from a broader cultural tendency to find women’s voices less credible and less authoritative than men’s. We don’t just disbelieve women about rape, we disbelieve them about everything, up to and including their own bodies.

In fact, women and the health care establishment have been at odds for much of recorded history. Essure is not the only or the first instance of doctors just plain refusing to believe women’s pain. Stereotypically feminine ailments, like fibromyalgia (whose sufferers are 80 to 90 percent female) have been dismissed as mass delusions. Experiences as universal as menstrual cramps and PMS were thought to be imaginary until recently (and PMS still has its skeptics). In 2018, doctors determined the pain of cramping could be “almost as bad as a heart attack,” yet physicians were still being taught that over-the-counter drugs like ibuprofen “should be good enough.”

Even in emergency situations, women are routinely disbelieved. In 2015, Joe Fassler wrote a harrowing account of his wife Rachel’s emergency room visit for ovarian torsion, a life-threatening form of organ death that ranks among the most extreme forms of pain a human being can experience. She was kept waiting for hours, several of them without anesthesia, and she was initially given treatment for kidney stones because her doctor hadn’t done the necessary internal scan. Throughout the experience, nurses chided Rachel for writhing and screaming in agony: “‘You’re just feeling a little pain, honey,’ one of them told Rachel, all but patting her head.”

Fassler’s account speaks to another problem: Doctors don’t catch women’s problems because they don’t account for women’s bodies. (A necessary disclaimer here: Not everyone with a uterus is female, and trans men and nonbinary people routinely experience health care discrimination. I’m using the female generic here because our mistreatment of these patients is inextricably linked to disdain for women and femininity.) In Rachel’s case, the ovarian torsion was caused by a cyst that should have been palpable through her skin. But the problem isn’t confined to reproductive health: In one study, almost 30 percent of women who had a heart attack were initially denied medical care because their doctors didn’t think their symptoms were heart-related. Women have different heart attack symptoms than men do, and the symptoms doctors think to check for — chest pressure, pain down one arm, etc. — are more common in men.

These problems play out intersectionally; black women with endometriosis, for example, are often falsely diagnosed with STDs due to medical racism. But they all rest on the fact that women are not regarded as credible authorities about their own lives or needs.

Lurking behind all these stories of malpractice and missed diagnosis, from fibromyalgia to broken birth control, is the grim specter of hysteria — a mental illness, diagnosed mainly among women, in which emotional distress was said to convert into physical symptoms. In practice, “hysteria” was a catchall diagnosis for any number of mental or physical ailments. But it embodied a belief that still informs medical practice today: Women could believe they had symptoms, and they could even think themselves into manifesting those symptoms, not because they were sick, but because they were women, with all the emotional fragility and gullibility that supposedly implied.

To this day, when women say they don’t feel well, our first instinct is to wonder if they’re being melodramatic or acting out for attention. And in a dispute between a woman and a medical practitioner about her own experience, the medical practitioner is still automatically assumed to be in the right — even when we have a mounting pile of evidence that this isn’t always true and that the assumption harms and even kills female patients.

Feminists have spent decades fighting to have women’s lived reality included and reflected by medical authorities. That fight has given rise to everything from the natural childbirth movement to the growing movement to help women without access to abortion clinics self-induce safe medical abortions. In an odd historical coincidence, the announcement about Essure’s restriction happened on the same week that feminists learned Our Bodies, Ourselves — the feminist, amateur-written sex-ed manual that was perhaps the most widely known product of this movement — was ceasing production after nearly 50 years. It would be nice to think Our Bodies was ending because the feminist movement had outgrown the need for it, but in 1975, feminists were protesting the FDA over the dangerous side effects of that era’s birth control pills; in 2018, women are raising the alarm on Facebook about Essure. Time has moved on, technology has moved on, but the problem is still the same.

But at least, in this age of believing women, we can recognize that women experience many, many traumas that are dismissed by the relevant authorities. The same system that calls a woman a vindictive liar for reporting a man’s bad or toxic behavior and dismisses her as hysterical or fragile if she exhibits justified emotional distress also calls her weak, melodramatic, or difficult if she reports physical pain or medical mistreatment. There’s no way of knowing how many women would have been saved the pain and risk of broken or malfunctioning Essure devices if the FDA had listened to women sooner. But we can take the story as a warning: The next time a woman says she hurts, for any reason, we need to believe her pain.

Sady Doyle

Written by

Author of “Trainwreck: The Women We Love to Hate, Mock, and Fear… and Why” (Melville House, 2016). Seen at Elle, In These Times, and all across the Internet.

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