Noa Fleischacker found herself suddenly sobbing with a friend over dinner in their Chicago apartment in June of 2017. Her friend Hannah Barg was sharing a story about another friend with vaginismus—a chronic pain condition that meant any kind of vaginal penetration felt like a sharp knife. That was the first time Fleischacker realized, “Wow, there’s someone else who has what I have.”
Fleischacker had been working toward penetrative sex for months to no avail. “Every time I tried, it felt like there was a wall,” she says. It felt “like a stretch you’re not supposed to be able to do—one that feels physically impossible for your body.” A dancer through college, she had experienced that kind of physical duress before. “I had some intense teachers who would push us down while we were doing splits,” she says. “You’d be trying to breathe through the pain—that’s what sex felt like.”
This pain from penetration predated sex: Fleischacker couldn’t insert a tampon; she squirmed away when a gynecologist tried to use a speculum for a standard Pap smear. She had even been prescribed sedation pills for a standard gyno visit—and when that failed, she’d undergone anesthesia just to get the exam done. “That was the first moment I was like, What’s happening?” she says. “It’s not normal to go under anesthesia and pay hundreds of dollars to do a routine pap smear.”
Research on chronic vulvar pain in women is limited, but growing—and shows that getting a diagnosis is often difficult. A University of Minnesota study in 2013 found that 35% of women with provoked vestibulodynia—a condition which causes pain at the entrance of the vagina—had more than 15 appointments before getting a diagnosis, with 37% noting diagnosis took over three years after they first had symptoms.
When Fleischacker opened up to another doctor about her challenges with sex, they asked, “Does your boyfriend know what he’s doing?” she recalls. That didn’t sit well with her: “This can’t just be ‘my personality,’ or ‘fear,’” she says. Finally Fleischacker went to a pelvic-health specialist. “That was the first time I saw someone who took me seriously,” she says. She began to actively seek treatment: seeing new doctors, working with pelvic-floor physical therapists, and trying new medications.
With each appointment, she sent Barg, who had experience producing radio shows, a voice memo on WhatsApp documenting her journey. Those notes eventually sparked a podcast called Tight Lipped, which the two women started to “create a much more public conversation around conditions that are often shrouded in shame and stigma and silence and secrecy,” Fleischacker says.
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It’s estimated that before we turn 40, up to 28% of American women experience chronic vulvar pain, or pain with penetration—conditions like vulvodynia, dyspareunia, provoked vestibulodynia, pelvic floor dysfunction, and endometriosis create a tangled web of understudied and oft misdiagnosed health issues that can cause chronic pain. Tight Lipped shares those stories. “It’s so funny, looking back now,” Fleischacker says, “but I felt like I was genuinely the only person in the world with this experience.”
Since releasing their first episode of Tight Lipped in May of 2019, Fleischacker and Barg have connected with hundreds of people with vaginas for a public conversation on a very private type of pain. “Every time I post on Facebook, a different person from my life, from high school, or college, or work, or friends of friends, reaches out. Often their messages are like, ‘I don’t talk about it, but I also have this,’” Fleischacker says. “We’ve normalized pain with periods and sex, so much so that people don’t think they have an actual condition.”
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So, if the pain is real, and thousands of women are walking the streets with these conditions, why don’t we all talk about it?
Sexual pain can deeply impact a woman’s identity. These so-called private pain conditions are linked to a higher prevalence of depression and a host of other psychologically challenging side effects. Fleischacker hears this a lot in the stories sent to her by listeners: “‘If I tell people, they won’t want to date me.’ Or ‘When friends talk about sex, I feel left out, so I just shut down,’” she recounts. She sees this same sentiment in Facebook groups about these conditions. “A lot of the posts are about the goal being penetrative sex, and they’re doing their pelvic-floor stretches because they believe there is something wrong with them that they have to fix, or it’ll ruin their relationships,” she says.
With a culture that normalizes pain and promotes a “grin and bear it” mentality, “there’s so much shame and stigma,” Fleischacker says. “I was blaming myself, but it’s actually because the health system doesn’t train gynecologists on a condition that affects up to a quarter of people with vaginas.”
The stigma creates three key obstacles for women with vulvovaginal pain: being believed, being diagnosed, and being treated. In a study of more than 13,500 women, 48% of those who reported experiencing vulvar pain lasting three or more months never sought health care. More than 50% of those who did seek care never got a diagnosis.
With conditions that can be challenging to diagnose, Myra Katz, PA-C, a board certified patient advocate, recommends documenting what you’re feeling down there, with timing and details. “You should write down what’s going on, what triggers it or bothers it, what makes it better or worse,” she says. “You as the patient have to come in with your own agenda. A first goal could be to have your provider listen to you and acknowledge that it’s real. Another goal might be understanding treatment options, for example pelvic floor physical therapy.”
“Women shouldn’t live with pain or discomfort,” says Katz. “These are real problems. If you have discomfort, you need to see a doctor—and if that doctor at all disparages you, don’t be afraid to find somebody else.”
You can listen to Tight Lipped here.
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