Study spotlights gaps in provider training for hEDS vulvar pain care
Doctors, therapists rely on experience, trial and error to diagnose and treat pain
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Gynecologists, urologists, and pelvic floor physical therapists often diagnose and treat vulvar pain in women with hypermobile Ehlers-Danlos syndrome (hEDS) without formal training in this type of pain care, relying instead on experience gained directly from their patients, an interview study found.
The study described how these providers, who also work with women with hypermobility spectrum disorders (HSD), navigate a fragmented healthcare system, adapt treatment through trial and error, and work to rebuild trust with patients whom previous doctors have often dismissed.
“More research and greater interdisciplinary collaboration and referral networks are needed to improve health outcomes for patients with hEDS, HSD, and vulvar pain,” the researchers wrote.
The study, “Healthcare provider opinions and work experiences toward diagnosing, treating, or caring for individuals with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), and vulvar pain disorders: a qualitative study,” was published in BMC Health Services Research.
hEDS is the most common type of EDS, a group of inherited connective tissue disorders marked by abnormally mobile joints, soft, stretchy skin, and fragile tissues. People with hypermobile joints who don’t meet the full diagnostic hEDS checklist are classified as HSD. These conditions are often associated with chronic vulvar pain disorders including vulvodynia (chronic pain or discomfort in the vulva), vestibulodynia (pain at the vaginal opening), and pudendal neuralgia (pain from the nerve that controls movement and sensation in the pelvic area).
‘There was no training on this’
Despite growing awareness of hEDS and HSD, gaps in provider training to recognize and manage vulvar pain disorders persist. Few obstetrics/gynecology residents reported feeling comfortable diagnosing vulvodynia, and fewer than half of related residency programs offer educational programs on vulvar pain disorders.
Researchers at The University of Texas Health Science Center at Houston explored providers’ work experiences in diagnosing, treating, and caring for vulvar pain in patients with hypermobility.
The team interviewed 14 U.S.-based providers: eight pelvic floor physical therapists and six medical doctors specializing in obstetrics/gynecology and urology. On average, providers had 11.6 years of experience in their specialty and 11.7 years treating hEDS/HSD patients.
A few common themes emerged from the interviews. The first, which the researchers dubbed “practicing in uncertainty,” reflected providers’ reports of limited formal training. Several stated plainly, “There was no training on this.” One recalled, “When I first started doing this, I was like, I don’t know how to help with that.”
Providers described learning from patients themselves, continuing education courses, and professional networks rather than structured medical training. Participants also commonly reported feelings of inadequacy and vulnerability.
Another theme that emerged centered on whole-body approaches to care. Providers described moving away from treating the pelvic floor in isolation, due to the high burden of co-existing medical conditions and symptoms in this population.
“Pelvic health PTs are ortho PTs,” said one, referring to physical therapists. “They should be ortho PTs. Even though I started in ortho, everyone needs to know how to treat the body as a whole. The pelvic floor should never be treated in isolation.”
Providers noted that standard interventions like stretching or pelvic-only treatment models may be ineffective or harmful for hypermobile patients, who may need more comprehensive, stability-focused exercises instead.
Another theme, described by one provider as “What’s yelling at us today?”, involved trial-and-error treatment. Providers described treatment as ongoing and adaptive, including medications, creams, botulinum toxin, and nerve blocks. But many of these treatments didn’t work for the hEDS and HSD population.
Providers reported evaluating treatment effectiveness on short timelines, often within three to five weeks, and referring patients to other providers if they didn’t improve. They noted that common pelvic floor physical therapy techniques could sometimes trigger flares in hypermobile patients.
An “overdose of an exercise can completely cascade into this chain of events, where now [patients] they are in so much pain that they have to kind of start from square one,” one participant said.
Trauma-informed care
Trauma-informed care was also a prevalent theme. Providers described patients who had met with disbelief from previous doctors. “I have seen in my practice that many healthcare professionals, unfortunately, dismiss patients when they bring up hypermobility, or simply do not believe them,” one said.
Providers emphasized building trust through consent, active listening, validating patient experiences, and meeting patients where they are in their lives, based on their individual goals and priorities.
Providers also described challenges they faced with patients who had several complex, coexisting conditions and needed care from multiple specialists and referral networks.”It’s literally the blind leading the blind” for some providers looking to collaborate across disciplines, the researchers said.
While some providers noted gradual improvement in the field, others reported colleagues’ skepticism about whether conditions like hEDS are real, making it difficult to refer patients to the right specialists.
One provider noted that opportunities to learn from specialists were limited. “The only time you meet an Ehlers-Danlos expert is at an annual meeting once a year, and they may not even come the next year,” the provider said. “If you miss that lecture, you’re done.”
Providers also highlighted significant challenges in sharing research, which remains limited. Others called for a better understanding of the conditions and broader clinical consensus.
“These findings showed how providers who specialized in women’s health and vulvar pain navigated a fragmented healthcare system amid uncertainty, complexity, and rapidly shifting care models among hEDS and HSD patients,” the team concluded.
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