Democracy Dies in Darkness

How would you change your OB/GYN visits? This tweet got 3,000 responses.

A doctor asked patients to weigh in on how they would ‘design/optimize a visit to the gynecologist’s office’

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December 8, 2021 at 1:03 p.m. EST
(María Alconada Brooks/ The Washington Post)

Earlier this week, Hanne Blank, a historian of sexuality and medicine, saw a tweet going viral that reminded her of a chapter of feminist history from 50 years ago.

On Sunday, Indianapolis-based urogynecologist Ryan Stewart, preparing to launch his own pelvic health center next year, took to Twitter to request that people weigh in on how they would “design/optimize a visit to the gynecologist’s office,” asking that they share “problems, frustrations, solutions.”

As of Wednesday morning, more than 3,000 Twitter replies had flooded in, many of which critiqued traditional models of gynecological care — characterizing them as painful, impersonal and outdated — and called for more inclusive and holistic practices. (Stewart has not responded to a request for comment.)

To Blank, both the number and nature of the responses are “proof that these are unresolved issues,” pointing to a notable May 1969 “female liberation conference” at Emmanuel College in Boston, where a group of women gathered at a workshop on “Women and Their Bodies” to discuss their experiences — and frustrations — with their doctors.

Those discussions led to the publication of a book of the same name — “Women and Their Bodies” — the following year. In 1971, that book was renamed “Our Bodies, Ourselves” to emphasize women’s autonomy; it sold 225,000 copies, mainly by word of mouth, and included information they didn’t get from their doctors — on birth control, abortion, pregnancy, gender identity, sexuality and menopause. In 1973, Simon & Schuster published a commercial edition of the book, which has since become a classic of feminist literature, Blank said.

But all these decades later, “we haven’t created new ways of doing medicine,” Blank said. “We have a 2,000-year-long history of Western medicine that is male-dominated and male-oriented, in which women’s bodies are basically considered inconvenient and nonstandard. … Gynecology has not had the chance to develop as much as it could.”

Patients are warned that IUDs can be ‘uncomfortable.’ But many say the pain is excruciating.

Some historians have characterized gynecology’s very beginnings as complicit with racism and sexism: James Marion Sims, known as the “father of modern gynecology” and the inventor of the speculum, conducted his research and experimented with his surgical techniques on enslaved Black women without anesthesia, prompting some historians to argue that the women probably did not consent.

Responses to Stewart’s Twitter callout argue that gynecological care is still rooted in patriarchal and racist practices: Twitter users classified speculums as “archaic,” stirrups as uncomfortable and unnecessary, and many offices as poorly designed, inaccessible to people with disabilities and lacking representation of people of color in both staff and medical imagery. Others said their OB/GYN appointments often left them feeling dismissed, particularly when they expressed pain and faced a lack of pain relief options for procedures.

Research shows that physicians are less likely to take women’s expressions of pain seriously than men’s, and that Black patients face additional barriers to being treated for pain due to racist stereotypes that they have higher levels of pain tolerance than White patients — research that some respondents to Stewart’s thread also noted.

Helai Hesham, a urogynecologist and assistant professor of obstetrics and gynecology at Columbia University Irving Medical Center, agrees that gynecological care, and medical care more broadly, needs to evolve in light of patients’ concerns: “Changing with patients, changing with societal norms, changing with advances is something that should be done in all different parts of medicine,” she said.

She pointed to pain recognition and pain management as something “that [more OB/GYNs] probably should’ve been talking about years ago.” Providers could improve, she said, by explaining to patients how different procedures may make them feel and the different pain management options available.

But such sensitivity to pain isn’t necessarily standard among all OB/GYNs, the Twitter thread suggests.

Mollie Gathro can relate to feeling like her OB/GYNs don’t take her pain seriously. Gathro is a 34-year-old in West Springfield, Mass., living with degenerative disk disease, a chronic pain condition that affects the spine. She said it took her six months to get a diagnosis for endometriosis, a disorder in which the tissue normally lining the uterus grows outside of it, back in 2004. The doctor who first examined her didn’t offer treatments or referrals, she said, despite the fact that he noted her condition was “probably endometriosis” — which causes chronic pain — following her initial consultation. She later learned of his hypothesis when she had to get paper copies of her records to bring to a new doctor, she said.

“I was in so much pain I couldn’t function,” Gathro said of the time before she received her diagnosis.

Endometriosis affects anywhere from 10 to 20 percent of Americans of childbearing age, and it can take up to 10 years to diagnose in the United States.

Gathro’s treatment improved after switching providers, she said, but it wasn’t all smooth sailing: One gynecologist burned her vaginal skin after using a speculum warmed up under too-hot water, she said.

Those alleged experiences, among others she said centered on her weight, led her to reply to Stewart’s thread with tips that gynecologists be more sensitive with how they use speculums, give patients control over whether they want to be weighed during appointments, and vary the sizes of their gowns and tools.

Transgender people often bear the additional burdens of dealing with OB/GYNs who have never before treated out trans patients, according to 29-year-old Caleb LoSchiavo, a trans man and doctoral candidate in social and behavioral health sciences at Rutgers University whose research focuses on trans peoples’ experiences with health care.

“It is so common for trans people to have an impossible time finding a gynecological care provider who is even experienced in treating trans patients, let alone being actually good at it,” he said.

These nonbinary patients were seeking trans health care. But in a binary system, they felt ‘invalidated.’

A 2015 study of more than 140 OB/GYN providers published in the Journal of Women’s Health found that 80 percent did not receive training in residency on how to care for transgender patients.

Because “trans people have unique needs” — which may include gender dysphoria and possibly dealing with other lingering trauma they’ve experienced as a result of transphobia — it’s crucial that gynecologists and other health-care providers anticipate and respond to these needs, LoSchiavo said. They can do so, he told Stewart on Twitter, by ensuring all staff are trained to treat trans patients and creating gender-inclusive waiting rooms and space to include pronouns on intake forms.

LoSchiavo encountered those features, and others, at the doctor he visited last year for his hysterectomy, he said: “It was very clear that all of the staff in the office knew how to care for trans patients,” which “made the experience feel more comfortable and safe.”

Amy Gravino, a 38-year-old relationship coach at the Center for Adult Autism Services at Rutgers University, also left comments on Stewart’s thread based on what she said were her own experiences going to an OB/GYN as a person on the autism spectrum.

When Gravino underwent a cervical biopsy in 2018, she said, her doctor “tried to make it as bearable as possible” by showing her every piece of equipment she’d be using — but the procedure, which she said she underwent without anesthesia, still felt like “a lobster was using its pincers to play ‘Ode to Joy’ on my cervix,” she said.

“It was profoundly painful,” Gravino added. “After it was over, I sat there and I cried. There’s something that’s inherently kind of violating about people with cervixes and uteruses’ medical procedures — it’s invasive, and I was not prepared for the emotions that would bring up.”

And for patients on the autism spectrum who may struggle with communication, articulating those feelings may be more difficult, she added: “Autistic people may not be able to express or articulate pain they feel the way neurotypicals do.”

In light of this, autistic patients could benefit from clear explanations of gynecological procedures and nonverbal ways to communicate with doctors and nurses if they’re feeling pain, she replied to Stewart’s thread.

Increased and improved communication could improve all patients’ experiences with their OB/GYNs, according to research.

Hesham agrees that the dynamic could improve if providers make patients feel comfortable voicing their concerns: “If we allow our patients to voice their discomfort, then we can deal with it and actually figure out what [treatment] makes sense,” she said.

In her own interactions with patients, Hesham said, she tries to shift the balance of power to make patients feel more comfortable by talking to them before procedures about their concerns while they’re fully dressed rather than in the paper gown they wear during them.

“That level of vulnerability, that level of comfort immediately goes down, being in a cold room, half-naked, and then having a provider come in who’s fully clothed,” she said. Many respondents to Stewart’s Twitter thread agreed.

Hesham’s office also provides patients with handouts listing every aspect of what a physical exam will include, she said, given that “going to an OB/GYN’s office is difficult for many people.”

Stewart’s Twitter thread — and his stated plans to incorporate the responses into an employee handbook — is one example of the power that comes from patients raising their concerns with providers, Hesham and Blank said.

But its existence is also something of a testament to enduring inequities still plaguing the health-care system, Blank added: “Every single one of those voices is someone saying, ‘I’ve been let down by the system that exists.’ That’s something to pay attention to.”