Noa Fleischacker ’15 cares more about the vaginal pain and discomfort she and others have felt than she cares about anyone’s comfort level in discussing it. In fact, she’s quite public about her privates. “If you Google me,” she says, speaking over video from a coffee shop, “it’s all ‘Noa and her vagina.’”
Fleischacker is a cofounder (along with Sarah Minion ’17) of Tight Lipped, an organization created to call attention to chronic vulvovaginal pain—an umbrella term to describe conditions that can cause things such as vulvar burning and itching, UTI-like symptoms, and pain when sitting. Using the grassroots community organizing skills they first honed as students at Oberlin, Fleischacker and Minion are working with universities, doctors, health care experts, and even government officials to ensure the medical community takes these conditions—and the patients who live with them—more seriously.
“Everything that we do is in service to grass roots organizing,” Fleischacker says. “How do we actually make changes to hospital systems, research funding, and treatment options? These are all deeper systemic issues. Some of the organizations and people who have worked on this before us are creating support groups. But we’re explicitly like, ‘Yes, we want to build community and support each other—and none of this is going to change until we make deeper systemic change.’”
Tight Lipped arose out of Fleischacker and Minion’s own personal experiences
with chronic vulvovaginal pain, which they also describe using the term pelvic floor dysfunction. “I went through all of Oberlin, not even really thinking or knowing that I had a vulvovaginal pain condition,” Fleischacker, who majored in anthropology, says. “I didn’t know that was a real thing, even though I took SexCo [the sexual information course offered by Oberlin’s student-run Experimental College program, or ExCo] and learned all of the things that they never taught you in high school. But no one ever talked about this.”
Several years later, Fleischacker finally sought medical care for her pain. “As I went through the medical system and started going—as many, many people with these conditions do—from doctor to doctor to doctor and being dismissed, being told, ‘It’s all in your head,’ I got more and more frustrated and started being more open about my experience and started talking to friends and family members. And every time I talked to someone, it turned out either they knew someone or they themselves had a similar condition.”
“I started wondering why, if this is so common, how have I known some of these people for six years... and never talked about it?”
In May 2019, Tight Lipped launched a podcast, settling on an approach based around storytelling so people could share experiences and build community. A month later, they held a workshop in Chicago, followed in November by one in New York in the waiting room of a vulvovaginal pain clinic. Building on the podcast’s premise, the in-person gatherings were a place for those with similar experiences to share stories and brainstorm ways to address the challenges they were facing, particularly in terms of difficulty accessing care and insurance coverage.
When Fleischacker checked the RSVP list for New York, the first name she saw was Sarah Minion, whom she had known at Oberlin through their Old Barrows Co-op. Minion, a double major in comparative American studies and politics, was also curious why vulvovaginal pain conditions never came up when she took SexCo. “I was open about it with friends, but I didn’t have the language, and so it felt like a personal problem,” Minion says, noting she connected with two others at Oberlin also dealing with the same kind of pain. “I remember sitting in Slow Train [coffeehouse] and none of us really having the words.”
Minion realized how common her experience was at the workshop, which drew a dozen people, including three Oberlin alums. “When I had first gotten diagnosed, I had seen the statistic of 1 in 4—but I hadn’t internalized that until sitting in that room,” she says. “I started wondering why, if this is so common, how have I known some of these people for six years—including Noa, who was one of my close friends in Oberlin—and never talked about it?”
In fall 2020, Tight Lipped released an 80-page zine featuring articles, poetry, and artwork from 50 contributors. Called Opening Up, it had a similar effect: At the height of the COVID-19 pandemic, Tight Lipped began hosting virtual events—some with more than 100 participants—during which the zine’s authors and others would share their experiences. For some, “it was the first time they’d ever even seen someone else who has a pelvic pain condition,” Fleischacker says. “Many people started the call with their videos off and then slowly turned them on as they got more comfortable.”
As Tight Lipped continued its community-building events—in addition to New York City, they’ve hosted in-person programs in San Diego; Chicago; Los Angeles; New Haven; and Washington, D.C.—it also launched a grassroots campaign targeting gaps in the education that future OB/GYNs receive in residency programs. The goal was to ensure these programs provide training on common chronic vulvovaginal and pelvic pain conditions. “It’s really a matter of chance or luck if you happen to go to a program where there’s someone who actually has some expertise and knows how to diagnose and treat these conditions,” Fleischacker says. “Learning about vulvar, vaginal, and pelvic pain generally isn’t a part of the core curriculum.”
This campaign has already led to the pair linking up with the Yale School of Medicine to facilitate presentations to OB/GYN residents led by various speakers, including patients sharing perspectives about living with chronic vulvovaginal pain. Tight Lipped also formed a related medical advisory board with leaders in the field of vaginal and pelvic health—a group that includes obstetricians and gynecologists, pelvic floor specialists, and physical therapists. Fittingly, some of these members are also working on changes to residency programs. “We’re not trying to reinvent the wheel; we’re trying to say making change is doable,” Minion says. “And it’s time that we do it.”
This patient-led organizing and advocacy, Fleischacker says, was a rousing success. Now Tight Lipped and Yale are collaborating to develop and pilot a new elective curricu- lum on vulvovaginal and pelvic pain set to debut in January 2024. It could represent the start of broader systemic changes: Ultimately, their goal is to implement baseline national standards of competency, so all OB/GYNs leave their programs with comprehensive knowledge about vaginal and pelvic pain and related conditions—how to diagnose them, provide basic treatment, and refer patients.
“We want every single gynecologist who is graduating from a residency program to have learned how to examine a vulva—not just [conduct] a pelvic exam,” Minion says.
Further down the line, Fleischacker and Minion also hope Tight Lipped will address inequities in the medical system. Accordingly, they’re participating in a working group charged with drafting a women’s health implementation plan for New York City, one of several such health-related initiatives directed by Mayor Eric Adams. “There are enormous racial and economic disparities in who is getting diagnosed and treated,”
Fleischacker says. “A lot of people who are joining us are people who are the most privileged, because the people who are getting diagnosed are the people who are able to go and see, like, 10, 12, 15 doctors or pay out of pocket if their insurance doesn’t cover something. So a huge priority for us in the OB/GYN and residency campaign is around this: How do we close this gap and increase access to care for everyone?”
With the second season of its podcast in the books and communities taking shape in New Haven, Los Angeles, San Diego, and New York City, Tight Lipped is proof that the combination of grassroots organizing and education has the power to destigmatize. “As much as a pap smear is normalized, it should be normalized that a lot of people have a chronic pelvic pain condition,” Minion says. “When you’re learning about sex ed in school, you should be told, ‘If it hurts you to put a tampon in, then you might have one of these conditions, and here’s what you can do,’ so that people don’t go for decades without a diagnosis.”
Jeff Hagan '86 is the former editor of the Oberlin Alumni Magazine. Additional reporting by Annie Zaleski.
This story originally appeared in the Fall 2023 issue of the Oberlin Alumni Magazine.
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