An examination of the vulvar pain disorders, pain symptoms, and associated vulvovaginal findings experienced among hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder patients: a scoping review.

INTRODUCTION: Vulvar pain disorders, pain symptoms, and associated vulvovaginal findings are underrecognized among hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) patients. These conditions are not commonly understood in clinical practice, underscoring the need to map which vulvar pain disorders and pain symptoms are identified, measured, and reported across studies in the literature. OBJECTIVE: To review, synthesize, and examine the types of various vulvar pain disorders, pain symptoms, and associated vulvovaginal findings experienced among hEDS and HSD patients. METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, we conducted a scoping review using a systematic search across five key databases: Medline (OVID), Embase, CINAHL, Cochrane, and Web of Science, as well as the first 200 results from Google Scholar. Medical Subject Headings and keyword search strings were systematically applied across databases. RESULTS: A total of 1073 studies were identified and narrowed to 18 that examined distinct vulvar pain disorders, pain symptoms, and associated vulvovaginal findings in patients with hEDS and HSD. The vulvar pain disorders reported in the literature included vulvodynia (n = 4), vestibulodynia (n = 3), pudendal neuralgia (n = 2), and persistent genital arousal disorder (n = 2), while the pain symptoms included dyspareunia (n = 13) and sexual dysfunction with pain (n = 1). Associated vulvovaginal findings included desquamative inflammatory vaginitis (n = 2), vulvovaginal candidiasis (n = 2), labial swelling (n = 3), lacerations (n = 1), bruising (n = 1), tearing (n = 1), and fissures (n = 1). Vulvar pain disorders and their related symptoms and findings were identified through various approaches, including clinical diagnoses, chart reviews, administrative codes, participant self-reports, and specialty clinic evaluations. DISCUSSION: The findings of this review underscore the heterogeneity of methods across studies and the inconsistent diagnostic labeling and evaluation of vulvar pain disorders and pain symptoms among hEDS and HSD patients globally. Future research should distinguish established diagnoses from symptoms and associated vulvovaginal findings and improve precision in study design, clinical evaluation, diagnostic criteria, and measurement methods.