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

Healthcare providers often lack the expertise to diagnose, treat, and care for patients with complex conditions. No known studies have explored how providers who treat vulvar pain disorders, such as gynecologists, urologists, and pelvic floor physical therapists, perceive their roles or their ability to care for patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). This research aims to understand the opinions and work experiences of providers who diagnose, treat, and care for hEDS and HSD patients with vulvar pain disorders. We conducted semi-structured interviews with 14 providers who diagnosed, treated, and cared for vulvar pain disorders in the United States (8 pelvic floor physical therapists; 6 medical doctors in obstetrics/gynecology and urology) via Microsoft Teams. We analyzed the data using Braun and Clarke’s reflexive thematic analysis alongside an interpretative phenomenological lens. Five themes were identified: (1) “There was no training on this”: Practicing in uncertainty; (2) Whole-body approaches to care; (3) “What’s yelling at us today?”: Trial-and-error treatment; (4) Building trust through trauma-informed care; and (5) “It’s literally the blind leading the blind”: Referral networks and research. 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. Providers emphasized the need for more adaptive, trauma-informed, and tailored approaches to care. More research and greater interdisciplinary collaboration and referral networks are needed to improve health outcomes for patients with hEDS, HSD, and vulvar pain disorders and symptoms. Not applicable.