One night while lying in bed, Becky Feldman asked herself, “Do I remember how to have sex?”
It had been at least a decade since the Los Angeles-based writer and performer attempted sexual relations. He had avoided it throughout his 20s for several reasons: 1) He thought that dating or being in a heterosexual relationship meant he had to have penetrative sex, which wasn't an option for her because it was too painful. 2) Several doctors had ignored his pain and told him that he just needed to relax. (After years of being misdiagnosed, she learned that she had a condition known as vulvodynia (a general term for chronic pain around the vulva). 3) All of the above weighed heavily on her self-esteem and confidence. .
When Feldman turned 30, he realized that he didn't want to spend the rest of his life closing himself off from intimacy and pleasure. That's when he decided to take the advice of his sex therapist and hook up with a high-class male escort, he said.
The night didn't turn out exactly as she expected. She and the boy kissed but did not have sexual relations. His conclusion from her experience? For the first time, she was able to confidently tell a potential sexual partner about her condition. He not only believed her, but tried to understand her pain, unlike her previous partners or her doctors.
This is just one of the intimate stories featured in Opening Up, a magazine created by a grassroots organization. tight lips, which advocates for people with chronic vulvovaginal and pelvic pain. The 80-page magazine, which was first published in 2020, is filled with artistic illustrations, question-and-answer interviews, handwritten letters and poems from people living with conditions including vulvodynia, vestibulodynia (a form of vulvodynia and a general term for pain in the vestibule). , pelvic floor dysfunction (when the pelvic floor muscles function abnormally), and vulvar lichen sclerosus (a skin condition that primarily affects the genital skin).
The cover of Tight Lipped's Opening Up zine.
(Kelly Fry)
Up to 28% of women suffer from these physical conditions, which affect people's daily lives when it comes to activities such as having sex, using tampons and wearing pants, according to a 2013 study published in the American Journal of Obstetrics & Gynecology. . which surveyed almost 20,000 women. (This study does not appear to include all gender identities.)
Because these medical problems do not require study in most residency programs, including those for gynecologists, many patients are misdiagnosed or not diagnosed at all by their doctor. Additionally, for some people, the shame and embarrassment associated with having one of these conditions prevents them from seeking treatment altogether.
“I think it was the scariest thing I've ever done in my life,” Feldman said of sharing her story in the magazine. He found out about Tight Lipped through his podcast and responded to a call for submissions to contribute to the zine. But “I'm happy that people can feel seen and heard through this,” said Feldman, who also speaks out about his medical condition through his solo comedy show, “Tight: A Night of Painfully Sexy Stories.” which he has performed in small theaters around Los Angeles
“I think a lot of people just relate to it,” he said.
That was Noa Fleischacker's hope when she and other members of the Tight Lipped community decided to create Opening Up. Since her youth, Fleischacker, founder and CEO of Tight Lipped, has struggled with using tampons. She, too, was unable to complete Pap tests and found penetrative sex painful. She was eventually diagnosed with pelvic floor dysfunction.
Shortly after he released Tight Lipped. podcast, allowing you to talk about how these conditions affect people's relationships, sexual and gender identities, and their daily lives in general. He also formed the patient-led organization for people with similar conditions. In November 2019, she hosted a weekend workshop in New York for people with vulvovaginal and pelvic pain. She said hearing people's stories inspired the magazine.
“I saw what happens when you put people in a room and you hear them say the same things they had only thought for themselves,” said Fleischacker, a former political organizer in Chicago. “So I felt like, 'Okay, we have to find a way to create something that not only makes people feel less alone, but also makes them understand the kind of broader political story about their pain and the medical experiences that they are having. '”
Tight Lipped used donations to make the Opening Up zine. Since Opening Up's publication, the organization has distributed more than 750 print copies of the zine to individuals and medical offices. (Sold for a suggested donation of $30. A free digital version allows people to hear contributors read their stories.)
Opening Up features entries from more than 50 contributors of various ages and backgrounds hailing from Los Angeles, San Francisco, Seattle, Chicago, Brooklyn, and Indianapolis, as well as Australia, Canada, France, the United Kingdom, and Germany.
(Julianna Brión / For The Times)
On Opening Up, there is an entry from a 78-year-old woman who wrote about how vulvodynia affected her marriage. Another entry tells the story of a woman who added her conditions (vulvodynia and pelvic floor pain) to her dating app profiles to inform potential suitors. Some of the entries are anonymous and content warnings appear on stories that discuss sensitive topics such as sexual assault.
For Kevinn Poree, 37, of New Orleans, reading the zine brought him comfort.
“I felt like, 'Oh my God, I understand where you're coming from,'” said Poree, who discovered Tight Lipped on social media after she was diagnosed with vaginismus and later developed vestibulodynia (pain in the vestibule that occurs with pressure). “Even if you don't necessarily have the same condition or the same symptoms, it was so shocking and alarming that most of us have gone through the exact same experiences with providers and with the stigma and treatment with friends, family and partners.”
“It was very cathartic,” said Poree, who has since become a member of the Tight Lipped community.
It took nearly a decade and about a dozen doctors for Keena Batti, 33, of Los Angeles, to receive a diagnosis of vulvar lichen sclerosus, pelvic floor dysfunction, and hormonally mediated vestibulodynia (which causes urinary urgency and frequency, as well as pain when urinating). and penetration). She developed the latter condition while taking birth control, she said. After reading Opening Up, she asked her pelvic floor therapist and her gynecologist if they could display the magazines in her Los Angeles offices. They happily did so.
After a series of unpleasant and embarrassing doctor visits, Batti said she wonders if having the zine earlier might have helped her show others that her “experience is not uncommon.”
“I think it's really powerful as a patient to see a tangible example of your own experience in print,” said Batti, one of the team leaders of Tight Lipped's Los Angeles chapter. (The organization has chapters in San Diego, New Haven, Connecticut and New York. Additional chapters are expected to open in the U.S. this year.)
“Hopefully, as we continue to distribute it, we can catch more people who are feeling isolated,” Batti said.
Dr. Rachel Rubin, a board-certified urologist and sexual medicine specialist, said she has seen the effect the zine available in her office has had on her patients in the Washington, D.C., area.
“It's really powerful and important,” Rubin, one of the few doctors trained in sexual medicine for all genders, said of the magazine. (He completed his scholarship with Dr. Irwin Goldstein in San Diego.)
“We can't know what questions need to be answered if we don't talk to people who actually have them,” said Rubin, who is also chair of Tight Lipped's medical advisory board, made up of 14 health care providers. “So it's a no-brainer to work with [Tight Lipped] because the more patient advocates and doctors can work together, the more changes we will see faster.”
In 2022, Tight Lipped launched a campaign for OB/GYN residency programs to include vulvovaginal and pelvic pain curriculum. The organization's first big win was at Yale School of Medicine, which will offer this area of study as an elective for residents, according to Dr. Yonghee Cho, assistant professor of obstetrics, gynecology and reproductive sciences at the school.
Fleischacker said Tight Lipped hopes to work with Cedars-Sinai Medical Center and USC on future curriculum.
Sarah Ponce, 25, initially planned to become a primary care physician when she enrolled in USC medical school in 2021. But after she was diagnosed with acquired neuroproliferative vestibulodynia (pain that begins as a severe allergic reaction to a medication topical or avoided due to severe yeast infection), he realized that he was most passionate about urology.
“I have experienced the health inequities and disparities that come with being a woman in pain, and I know many other patients who have as well,” said Ponce, a third-year medical student at USC. She added that she wants to change that.
As an organizer for Tight Lipped, she helps with the group's campaign at her school. She has also helped organize free pelvic health workshops at Los Angeles General Medical Center.
Tight Lipped also wants to make changes at the federal level. When President Biden announced the first White House initiative on women's health in November, the organization sent a letter with the signatures of more than 800 patients, medical students and health experts asking that pelvic pain be included and chronic vulvovaginal as an area of priority care. .
All of this gives hope to Ponce, Feldman, Poree and others.
In the magazine's foreword, the creators make it clear that Opening Up is not just for people facing these conditions. Rather, they encourage people to share the post with everyone they know, including romantic partners, doctors, high school sex education teachers, family, and friends.
“It's going to take more than just all the patients,” Poree said. “I think the more the general public knows about these conditions, the easier it will be for people to talk about them and get the help they need.”
