Any time Jennifer Vargas, a 35-year-old sex educator in Bushwick, attempted sex, she felt stabbing pain in her vagina so severe her body ached for hours. Nothing helped. Tight clothing exacerbated the “intense, grating sensation.”
Vargas’s symptoms began after a bacterial vaginosis (BV) infection, but the burning and itching persisted beyond a course of antibiotics. Then, she experienced extreme PMS for two weeks. “I was cycling through symptoms of severe anxiety and depression and low energy,” she said. “I was just like, something’s not right here.”
She returned to her gynecologist many times to resolve the lingering pain. Vaginal swab tests came back negative for BV, but they kept treating her for it without seeking other causes. After about two years of searching, Vargas was exhausted from appointments and feeling dismissed. Then, she was laid off from her job in early childhood education and placed on Medicaid. Finding providers who understood pelvic pain was already a challenge, but finding ones who took Medicaid was nearly impossible – and she gave up on a diagnosis.
It has now been six years since her symptoms started. Vargas estimates that gynecologists, pelvic floor therapists and nutritionists have cost her about $15,000 in out-of-pocket medical bills. Yet she has had no relief.
Vargas’s experience isn’t rare: for the estimated 26% of women who experience vulvovaginal pain, treatment and diagnosis are costly. The estimated economic burden of vulvodynia, an umbrella term for vulvar pain, in the US ranges from $31bn to $72bn annually, accompanied by a lower quality of life.
Delayed Diagnosis and High Costs
Some of the expense results from a delay in diagnosis. Almost 60% of the patients who seek care for vulvovaginal pain saw at least three different providers, most of whom could not diagnose them. Additionally, patients pay for treatments that may or may not work, and seek relief via lifestyle adjustments or supplements, said Elizabeth Hintz, an assistant professor of health communication at the University of Connecticut. Negative experiences with providers also “erodes the sense of self,” leading patients to seek mental health support, she said.
“People, especially in this space, will pay – if they can – anything to feel better,” Hintz said. “That also perpetuates this idea that this is a mostly wealthy white woman problem. Because those are the only women who can actually afford to solicit this.”
Kimberly Ellis, 33, a non-profit worker in Washington DC, also had symptoms that began after yeast and BV infections. When treating them didn’t resolve the burning and stabbing, she saw her primary care doctor, then several OB-GYNs and even a dermatologist. She found a vaginal disorders specialist in the area who took insurance, but had a year-long waitlist.
“I went to her a few times,” Ellis said. “But she was pretty honest that my issues are out of her depth.”
Ellis ended up searching for answers on Reddit. She found more providers who specialized in vulvovaginal health through local and online communities and eventually was able to get a diagnosis for pudendal neuralgia, or pain caused by damage or irritation of the pudendal nerve located in the genital and anal region, along with fibroids.
She estimates that she’s spent a minimum of $12,000 out-of-pocket on pelvic floor physical therapy and doctor visits. This number doesn’t account for services like therapy and acupuncture, which she started in order to cope with the pain and frustration. “It has wreaked havoc on my mental health as well,” she said.
Systemic Issues in Healthcare
Systemic issues often prevent patients with vulvovaginal pain from getting a diagnosis and affordable, effective care. To begin with, in the US, many vulvovaginal pain specialists operate outside of the insurance system due to low reimbursement rates, administrative barriers and appointment time constraints. This means an initial consultation with a specialist can cost $500 to $2,500.
Providers receive low or no insurance reimbursement rates because the insurers deem many sexual health conditions – including pain – a mental health issue, said Dr Corey Babb, a vulvovaginal specialist and medical director of the Haven Center in Tulsa, Oklahoma. Insurance companies also often limit appointment times to as little as 15 minutes, Hintz said. Many patients deal with overlapping conditions like vestibulodynia and hypertonic pelvic floor dysfunction, which require multi-disciplinary knowledge and significant time to properly diagnose and form a treatment plan.
“It’s a dumpster fire of brokenness,” said Dr Rachel Rubin, a urologist and sexual medicine specialist who runs a private practice in Bethesda, Maryland. Patients are a volume game, she said; larger institutions work with a large number of patients to make the low insurance reimbursement rates worthwhile, “and nobody is happy.”
Lack of Training and Research
Vulvovaginal pain is not covered in typical medical training, and specialists must seek out additional education on their own. Even obstetrics and gynecology students focus on pregnancy complications and surgeries like hysterectomies, Babb explained. Early in his practice as an OB-GYN, Babb had patients with questions about vulvar conditions like lichen sclerosus or low sex drive, which he did not know how to treat. As he researched answers, he learned about the International Society for Studying Women’s Sexual Health (ISSWSH) and decided to become a fellow to fill gaps in his knowledge and ended up specializing in sexual medicine, vulvovaginal pain and menopause.
Specializing in vulvovaginal pain spans beyond traditional gynecology, obstetrics and urology into hormonal, nerve, skin and muscle-related issues. Training and growing the field entails plenty of labor: publishing new research, teaching other practitioners, and spending hours with patients other doctors cannot help. But someone has to pay for it, and these scarce specialists charge a premium.
“If you were highly specialized in something that a lot of people could do, you wouldn’t charge $2,000 for a visit,” said Hintz. “Nobody would pay for it. You can make a lot of money off of desperate people, it turns out. That’s more of a cynical hot take.”
Research into vulvovaginal pain is also sparse. While there are more than 30 different treatment options for the symptoms of vulvodynia, almost none have been the subject of controlled research. This means patients and doctors must often figure out what works via trial and error. In 2024, the National Institutes of Health allocated just $2m of funding for vulvodynia. By comparison, headaches received $50m.
“No one is coming to save the day,” said Rubin. “Not the NIH. No academic centers. We are the grownups here, and we have to do the work.”
Hope Through Advocacy
Vargas attended an event in 2023 held by Tight Lipped, an advocacy group for patients with vulvovaginal and pelvic pain disorders. She joined their online community and saw a post about the Aziza Project, which provides gynecological pain patients with funding. Within days, Vargas was on the phone with the executive director, Stephanie Berman, and applied to be a client.
The Aziza project connected Vargas to Babb – Berman refers clients to Babb, who had treated her own issues – and covered her appointment fees and travel to Tulsa. Babb diagnosed her with hypertonic pelvic floor dysfunction; depleted levels of estrogen and testosterone, which can cause pain in the vaginal opening; and melanosis, or discoloration of the skin. It also covered several pelvic floor physical therapy sessions.
“It was like a weight had been lifted, to have somebody else come in and say you’re not alone and I’m going to help you carry this,” said Vargas.
Berman, 41, who lives in British Columbia, started the Aziza Project during her battle with vulvovaginal pain. In 2010, she could barely get off the couch. An ever-present itch burned her vulva, and her back throbbed throughout every menstrual cycle. She constantly felt bloated; the pain made it hard to think. One evening, she looked at her husband and said: “I’m going to be bedridden eventually.”
In July 2020, an ultrasound indicated that she might have endometriosis. That October, almost nine years after the onset of her symptoms, Berman had a hysterectomy, which relieved the severe cramping. But the vulvar stinging and burning persisted. The surgeon suggested lichen sclerosus, an inflammatory skin condition, might be the cause.
Multiple practitioners agreed with the lichen sclerosus diagnosis, including a dermatologist, though no one had confirmed it via biopsy. For two years, Berman used prescribed biologics and topical steroids, but nothing relieved the prickling, stinging, knife-like feeling. When she lived in Washington state, she saw a pelvic floor physical therapist who recommended a vulvar pain clinic in Seattle. At the clinic, the doctor offered no diagnoses, advice or treatment; he merely told Berman’s husband to “be gentle” and sent the couple on their way.
Berman was looking online for lichen sclerosus support groups when she came across an Instagram interview with Babb. She scrolled through his page, impressed by his knowledge, and wondered if he could help her. Berman booked a virtual consultation, which cost $250. She also booked a $500 in-person appointment, flights from Washington to Tulsa, and a hotel – a total spend of $8,000.
“The pain just takes over your ability to function,” she said. “I’d been used to my body betraying me for so long.”
At the appointment, Babb examined Berman and said the issue was nerve-related, not lichen sclerosus. He diagnosed her with hypertonic pelvic floor dysfunction and pudendal neuralgia. Berman received Botox injections for muscle pain and a nerve-block injection. “I had the best three days after that,” she said.
Since the initial appointment, Berman has returned to Tulsa seven times. The medical costs alone add up to $24,000. If you add travel, pelvic floor physical therapy, water aerobics for low-impact movement and specialist care costs, she estimated that her pain has cost almost $40,000 to date.
“That’s so scary,” she said. “For perspective, we owe $48,000 on our mortgage.”
Before her first consultation with Babb, Berman wondered how someone without means could access this caliber of care. Three months later, she launched the Aziza Project, named for the Hebrew and Arabic words meaning beloved, precious and mighty. She asked her community for donations of $5 a month that would go toward covering specialist appointments for patients who couldn’t afford it otherwise.
All of Berman’s extra income goes toward medical expenses. She takes 5% of donations from the Aziza Project – about $30 a month – as an operational fee and works as a budgeting coach. She and her husband live frugally: they share a car and spend about $40 on date nights.
The Aziza Project has been able to cover just over $8,000 in medical and travel expenses, split between four different patients. Berman hopes to raise enough in the future to cover follow-up visits, Botox injections and five to six nights of hotel stays – at a cost of $5,100 per patient.
Without the Aziza Project, Vargas said she would have been unable to pay for treatment. Medicaid wouldn’t cover the estrogen and testosterone compound cream that she needs for relief, nor has she found a local, pelvic pain-informed gynecologist to continue managing her care.
“It makes me really angry,” Vargas said. “There’s so many people who need this care and can’t get it.”
In the meantime, she said she had taken a break from treatment after several negative experiences with providers back home. “I can’t continue to see practitioners that are just seeing me as a muscle that needs to be pushed through,” she said. “The rest of me needs to feel safe and comfortable.”
