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 caring for people with vulvar pain disorders described substantial uncertainty when assessing and treating patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). In a qualitative study of 14 providers in the United States, participants reported limited training, fragmented referral pathways, trial-and-error treatment and an emphasis on adaptive, whole-body and trauma-informed care. The study documents professional experiences rather than the effectiveness of a treatment or changes in patient outcomes.

The researchers conducted semi-structured interviews by Microsoft Teams with eight pelvic floor physical therapists and six medical doctors working in obstetrics, gynecology and urology. These providers diagnosed, treated or cared for people with vulvar pain disorders. The team analyzed the interviews using Braun and Clarke’s reflexive thematic analysis alongside an interpretative phenomenological lens.

The design was intended to illuminate how participants understood their clinical roles, described their work experiences and navigated care for people with both hypermobility-related conditions and vulvar pain disorders. Because the study was qualitative and small, it did not provide comparative effectiveness data, prevalence estimates or controlled evidence about clinical outcomes. Five themes emerged.

The first, described in the study as practicing in uncertainty, reflected providers’ accounts of having little or no formal training on hEDS, HSD and the relationship between hypermobility and vulvar pain. The second involved whole-body approaches to care. Building trust through trauma-informed care formed a fourth theme.

Participants emphasized adapting care to individual needs and treating patients in a way that supported trust within an uncertain and fragmented healthcare system. The fifth theme concerned referral networks and research. Providers described shortcomings in the pathways connecting clinicians who treat vulvar pain with those familiar with hypermobility-related conditions, alongside limited research available to guide their practice.

The researchers said these findings show how providers specializing in women’s health and vulvar pain navigate uncertainty, complexity and rapidly shifting care models among people with hEDS and HSD. The study’s findings support calls for more research, greater interdisciplinary collaboration and stronger referral networks for patients with hEDS, HSD, vulvar pain disorders and associated symptoms. The evidence comes from 14 U.S.-based clinicians: eight pelvic floor physical therapists and six physicians in obstetrics, gynecology and urology.

That narrowly defined professional sample limits how broadly the findings can be applied to other healthcare settings, specialties or patient populations. The interviews capture reported experiences and perceived service gaps, not proof that a particular clinical model improves symptoms or health outcomes. The work was published as open-access research in BMC Health Services Research on 16 September 2026, and the authors stated that more adaptable, trauma-informed and tailored approaches to care are needed.

Subject of Research: Provider experiences caring for people with hypermobility conditions and vulvar pain disorders

Article Title: 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

Article References: Niedenfuehr, J., Cuccaro, P., Markham, C., & Schick, V. (2026). 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. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15605-9

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15605-9

Keywords: hEDS, HSD, vulvar pain, qualitative research, pelvic floor therapy, trauma-informed care, healthcare provider training, referral networks, interdisciplinary care, women's health, Healthcare, provider