Characterizing sexual dysfunction in females with hypermobile Ehlers Danlos syndrome or hypermobility spectrum disorder and genito-pelvic pain through cross-sectional analysis

Rheumatol Int. 2026 Jun 12;46(7):145. doi: 10.1007/s00296-026-06161-w.

ABSTRACT

BACKGROUND: Joint hypermobility is associated with connective tissue disorders, hypermobile Ehlers Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). Affected patients have high rates of myofascial pain and mast cell dysfunction, both of which have been associated with genito-pelvic pain.

AIM: To characterize diagnoses among patients with hEDS/HSD with genito-pelvic pain.gate thematic evolution and collaboration patterns, network visualisation and clustering analysis were carried out.

METHODS: Gynecology patients were evaluated with the 5-point Hypermobility Questionnaire (5HQ), and positive patients underwent additional diagnostic testing for hEDS and chart review. Patients also completed Female Sexual Function Index (FSFI), and Female Sexual Distress Scale (F-SDS) scales. Diagnoses and survey responses were analyzed with descriptive statistics.

RESULTS: Of the 44 total patients with a diagnosis of hEDS, 44 (100%) had provoked vulvodynia confined to the vestibule (vestibulodynia). Similar patterns were noted in patients with hypermobile features not fully meeting hEDS diagnostic criteria. Of patients with provoked vestibulodynia, 31.6% (25/79) had posterior vestibular allodynia, suggesting hypertonic pelvic floor muscle dysfunction as the only cause of their vestibulodynia, and 68.4% (54/79) had diffuse vestibular pain, suggesting an inflammatory, neuroproliferative, or hormonal etiology.

CONCLUSION: Hypermobile features are common among patients presenting for genito-pelvic pain.

PMID:42283871 | DOI:10.1007/s00296-026-06161-w