When she was 15 years old, Christin Veasley was struck by a car while riding her bicycle. The accident was so severe that by the time she arrived at the emergency room, she had enough blood pooled in her abdomen from internal bleeding that she looked eight months pregnant. Veasley survived, but after multiple surgeries and a year of rehabilitation, remnants of her accident lingered in her body in the form of chronic pain, likely triggered by the physical trauma to multiple areas of her body and possibly a traumatic brain injury caused by the accident, she said.
Over the course of six years, she rotated through different specialists who all sent her home with different treatment recommendations. She tried chiropractors, masseuses and physical therapy; enrolled in drug trials; took more than a dozen medications and even conducted neuroscience research on women's pain disorders to try and research a cure herself. At one point, she was spending 25 hours a week and tens of thousands of dollars solely on pain management. Later on, in 2012, she co-founded the Chronic Pain Research Alliance (CPRA).
As time went on, Veasley said her pain became like a ball and chain that got heavier and heavier. After more than a dozen treatments on top of working and taking care of kids, she told Salon in a phone call, “that ball and chain was huge, now to the point where it’s dragging your leg along.”
“Trying to figure it out just gets overwhelmingly challenging physically, mentally, emotionally and spiritually,” she said.
Chronic pain has been underfunded and undertreated, in part because the experience varies so much from person to person and can’t be diagnosed with a simple blood test like many conditions. Evidence suggests pain experienced by people identifying as women, in particular, is often dismissed in medical settings, and pelvic or genital pain conditions are shrouded in taboos — altogether causing many women with common pain conditions like endometriosis or vulvodynia, characterized by pain in the uterus or vulva, respectively, to be underdiagnosed and undertreated.
Treatments for women’s health conditions have lagged behind the need, and that’s particularly true for pain conditions, in part due to the misconception that women are simply “overreacting,” said Sheryl A. Kingsberg, Ph.D., the chief of the division of behavioral medicine in the OB-GYN department at University Hospitals Cleveland Medical Center.
“We know that in many areas of medicine women's pain is not taken seriously,” Kingsberg told Salon in a phone interview.
In general, multiple studies show women are undertreated for diabetes, strokes and heart disease when presenting with the same symptoms as men. One study found women were more likely to be seen as “hysterical” or “hypochondriacal” and experience a delayed diagnosis as a result. Another study in the Academic Emergency Medicine journal found women presenting with the same level of pain as men were less likely to be prescribed pain medicine.
Women of color, in particular, report having their pain dismissed, likely as a result of implicit biases that have been revealed in healthcare settings. This has been cited by the White House as one driving force behind the maternal mortality crisis, disproportionately killing Black mothers.
These biases have roots that trace back to the origins of modern medicine. “Hysteria” — derived from the Greek word, “hystera,” which means uterus — was the catchall diagnosis Greek physicians used for many conditions affecting women (for which sex was often prescribed as a treatment). Many other conditions affecting women were attributed to a “wandering womb,” that was thought to mysteriously wreak havoc by moving about on its own within a woman’s body.
Remnants of these historical narratives still persist in contemporary research, said Nicky Hudson, a medical sociologist at De Montfort University. Take endometriosis, which has been called an “undone science” and a “missed disease” because it affects more than 11% of women — yet there is no cure. Instead, treatment is mostly restricted to over-the-counter pain medications, hormone therapies like birth control or surgery.
“In cultural terms, when there isn’t an explanation for something, other things fill that gap,” Hudson told Salon in a phone interview. “I think that’s why certain ideas have persisted about women's pain.”
History has been slow to unwind the biases that developed against women in ancient times. It wasn’t until 2014 that the National Institutes of Health (NIH) required both female and male animals to be used in preclinical research, and 80% of animal studies in the journal Pain published between 1996 and 2005 excluded females. Yet women represent 70% of patients with chronic pain, and many women with one chronic pain condition actually have multiple pain conditions.
The reason why women make up a greater portion of chronic pain conditions is unclear, although some studies suggest males and females experience pain differently on the physiological level, perhaps due to differences in hormones, genetics or immune response. However, it could also be a result of psychological and social factors like differences in how people identifying as men or women cope with pain.
Another study published in Pain Reports showed early life adversity, which is thought to play out in a more complex fashion in women, could contribute to sex differences in pain, said Diane E. Hoffmann, Director of the Law and Health Care Program at the University of Maryland, who co-authored a 2022 paper on women's pain with Veasley.
“Because it takes a while for that research to come down the pipeline, recognizing the conditions that may affect women [differently] is still being compromised by basic animal studies,” Hoffmann told Salon in a phone interview.
Today a little-known chronic pain condition, vulvodynia was even less on doctors’ radar two decades ago when Veasley was looking for treatment, and she said she pretty much self-diagnosed herself. Eventually, she was able to find a local provider and get surgery to help relieve some of her pain, but many women don't have this option available to them, she said.
"It's very challenging to [diagnose and treat complex pain conditions like vulvodynia] in the typical 10-minute appointment that is covered by insurance," Veasley told Salon in an email. "Insurance coverage needs to change for the management of all chronic pain conditions, not just vulvodynia, for this reason."
Although some progress has been made to raise awareness for chronic pain, one 2003 study published in the American Medical Women's Association journal found that 40% of people with vulvar pain were still undiagnosed after three different appointments. Similarly, another 2004 study found roughly half of people with endometriosis saw five clinicians before being diagnosed. Today, hysterectomies are a commonly used treatment for endometriosis, but even those don’t always work to stop lifelong and debilitating pain for millions of women.
Veasley said women with vulvodynia have reported to the CPRA that doctors, in response to their concerns about genital pain, asked them if their partner was cheating on them or said they should go home and have a glass of wine to “relax.”
“Women face another level of stigmatization and bias when it comes to being taken seriously for a chronic condition like chronic pain that doesn't have any ‘objective markers,’” Veasley said. “The things that have been told to women with vulvodynia have been horrific.”
Recent studies have traced the neurological origins of chronic pain and helped legitimize the experience of many women who experience it, Veasley said. Still, the Centers for Disease Control and Prevention (CDC) suggests as many as 51 million U.S. adults have chronic pain, yet there are just under 6,000 pain medicine physicians in the country to treat them, and even fewer who specialize in pelvic or genital pain.
“Unfortunately, it takes a lot of years for research to trickle down into clinical care and to change how things are done,” she said. “We have a very long way to go in terms of having a better understanding of what [chronic pain] is, what it isn't and how to diagnose it.”
