After a while, the true-life horror stories women tell about their struggles to get reproductive health care start to bleed together. They almost always feature some variation on the same character: the doctor who waves a hand and says, “You’ll be fine,” or “That’s just in your head,” or “Take a Tylenol.” They follow an ominous three-act structure, in which a woman expresses concern about a sexual or reproductive issue to a doctor; the doctor demurs; later, after either an obstacle course of doctor visits or a nightmare scenario coming to life, a physician at last acknowledges her pain was real and present the whole time. Sometimes there’s a quietly gloomy boyfriend or husband in a secondary-character role, frustrated by the strain his partner’s health issue is putting on their intimacy.
That many women have stories of medical practitioners dismissing, misdiagnosing, or cluelessly shrugging at their pain is, unfortunately, nothing new. Research cited in the Journal of Law, Medicine & Ethics in 2001, for example, indicated that women get prescribed less pain medication than men after identical procedures (controlling for body size), are less likely to be admitted to hospitals and receive stress tests when they complain of chest pain, and are significantly more likely than men to be “undertreated” for pain by doctors. And there’s a multi-million dollar industry of questionable alternative health remedies that was arguably built at least in part on a history of doctors being dismissive toward women’s bodily health.
But in 2018, these stories of neglect and unhelpfulness within women’s health care, especially women’s sexual and reproductive health care, are bubbling up to the surface—being documented, circulated, and acknowledged by public discourse—in curious abundance.
It started early in the year. In January, a widely cited Vogue cover story on the tennis great Serena Williams, who gave birth to a daughter in September of 2017, told the harrowing tale of how Williams had to urgently insist to the hospital staff in her recovery room that what she was experiencing after her C-section was a pulmonary embolism in order to get the treatment she needed to stay alive. “The nurse thought her pain medicine might be making her confused,” the story reads. A month later, Vogue published an essay by the Girls creator Lena Dunham on her choice to have a hysterectomy at age 31 to end her struggle with what she understood to be endometriosis. “I had to work so hard to have my pain acknowledged,” she writes. “And while I’ve been battling endometriosis for a decade and this will be my ninth surgical procedure, no doctor has ever confirmed this for me.” After her uterus is removed and she wakes up in a recovery room, she writes, the doctors are eager to tell her she was right: her uterus is “worse than anyone could have imagined.” Then, in April, The New York Times published Linda Villarosa’s revealing report on the dangerous endeavor of being black and pregnant in America, a phenomenon partly attributed to medical practitioners’ “dismissal of legitimate concerns and symptoms.” The story’s primary character, 23-year-old New Orleans mother of two Simone Landrum, recalls being told by a doctor to calm down and take Tylenol when she complained of headaches during a particularly exhausting pregnancy; those headaches were later found to be caused by pre-eclampsia, a pregnancy complication that causes high blood pressure and can result in the placenta separating from the uterus before the baby is born. This happened to Landrum, and her pregnancy ended in a stillbirth.
The stories kept coming. Netflix’s The Bleeding Edge, a documentary released last month, is primarily about the poor testing of many medical devices on the market, but it nonetheless also functions as an indictment of carelessness toward women’s health at the regulatory-body level. Three of the four primary narratives are about medical devices hastily approved by the FDA and marketed to women as safe, easy solutions for fertility- and childbirth-related issues. One prominently featured woman whose medical device—the birth-control implant Essure—lands her in the hospital so many times she loses her job, her home, and her kids over the course of the documentary, recalls being told by a doctor that her abnormally heavy, persistent vaginal bleeding after its insertion is “because she’s Latina” and that her problems are all in her head.
The new KCRW podcast Bodies, a series about medical mysteries in women’s health that launched in July, kicked off its run with the story of a woman in her twenties who experiences deep, burning pain during sex and is initially told by a doctor that nothing’s wrong, lots of women have pain during sex, and that she should just wait and it’ll probably go away. After getting a referral for a specialist from a friend who visited 20 doctors over the course of seven years before getting a diagnosis, she’s diagnosed with and successfully treated for a type of vulvodynia—which the American Journal of Obstetrics and Gynecology describes as “common” (though “rarely diagnosed”).
Sasha Ottey calls this phenomenon “health-care gaslighting.” Ottey founded the Atlanta-based nonprofit PCOS Challenge: The National Polycystic Ovary Syndrome Association in 2009 to raise awareness of PCOS, a hormonal disorder affecting the ovaries that’s often linked to infertility, diabetes, and pelvic pain. Despite the fact that PCOS was first identified and researched in 1935 and the CDC has estimated it affects some 6 to 12 percent of adult women in the United States, many doctors still don’t recognize the symptoms. Women with PCOS and similar conditions like endometriosis and uterine fibroids, Ottey says, “have been told to suffer in silence.” Additionally, because PCOS often causes obesity or weight problems, many women with PCOS experience not just sexism but what Ottey calls “weight bias” in the health-care system. “Many women and young girls are told, ‘Oh, it’s all in your head. Just eat less and exercise more,’” says Ottey, who herself recalls being initially instructed by an endocrinologist to lose weight and come back in six months. “People who are following an eating plan and present their diaries to their physicians or nutritionists will be told, ‘You left something off. You’re lying. You’re not doing enough.’”
Ottey, who spearheaded the PCOS Challenge’s first-ever day of advocacy on Capitol Hill in May, has noted the recent shift in how—and where—women talk about their struggles getting the sexual and reproductive health care they need. “We’re at a critical juncture in women’s health, where women are now feeling more empowered to speak up. Because frankly, we’re frustrated,” she says. “We’re frustrated with the type of care that we’ve gotten. We’re frustrated that it sometimes takes someone decades to get a diagnosis. It’s been a year, or a few years, of being empowered and emboldened.”
Katherine Sherif, an internist at Jefferson University Hospital in Philadelphia and the director of the hospital’s women’s primary care unit, says she hears “day in and day out” from patients “about how they are not listened to [by other doctors], how they’re blown off, how a clue was missed.” Sherif believes most of the minimization of women’s health concerns is “unconscious” on the part of both male and female doctors, but blames general societal sexism for the gaps in women’s sexual and reproductive health care. Men with sexual and reproductive dysfunction have to fight for the care they need sometimes too, she points out, but “to a lesser extent,” from what she’s seen.
In her 23 years practicing medicine, Sherif has received a lot of thank-you notes from women she’s treated—and “they don’t say ‘Thank you for saving my life’ or ‘Thank you for that great diagnosis,’” she says. “They say, ‘Thank you for listening to me.’ Or ‘I know we couldn’t get to the bottom of it, but thank you for being there.’” So Sherif sees a common theme in the recent flurry of high-profile expressions of disappointment in women’s reproductive health care, feminist protests against President Donald Trump, and the #MeToo movement: All three, she says, result from women feeling that their complaints, concerns, and objections aren’t being listened to.
“Perhaps it parallels what’s changing in our society,” Sherif says. “When we shine a light in those dirty, dark corners, I think it may give us courage to shed light on other things.”
Ottey, meanwhile, believes women’s increasing candor about their health- and health care-related frustrations can be traced back to the advent of social media. Ottey describes her own struggle to finally get a diagnosis and a treatment plan for PCOS in 2008 as one that made her feel “absolutely alone,” but in the years since, she says, she’s seen women with similar conditions and complaints find and support each other on platforms like Facebook and Twitter. “Women see other women, and other girls, speaking up,” she says.
Ottey’s social-media strength-in-numbers theory is borne out in The Bleeding Edge, too: Women whose health deteriorated after getting the Essure birth-control device implanted eventually created an advocacy campaign after finding each other through a Facebook group launched in 2011. Thirty-five thousand women had joined by the time The Bleeding Edge was filmed.
Angie Firmalino, the Facebook group’s founder, remembers being surprised at how many women quickly joined the group, despite it being a project she’d started just so she could warn her female friends about the device. “We became a support group for each other,” Firmalino says, as a montage of selfie videos women have posted to the group page play onscreen. “The day I was implanted, I left the hospital and I was in pain,” says one woman. “They told me to take some ibuprofen and it’ll get better,” says another.
When Firmalino researched the process by which Essure was approved for sale and implantation, she found the FDA hearings had been videotaped, but the video company that owned the tapes would only release them to her for several hundred dollars. So she posted on the Facebook group asking for donations to buy the video—clips of which are repurposed in the documentary and account for its most chilling moments. They raised $900 in 15 minutes.