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Features of Vulvodynia Associated With Ehlers-Danlos Syndrome
Lisa M Bird1, Veronica R Olaker2, Rachel J Pope1
1Division of Female Sexual Health, Urology Institute and Department of Obstetrics and Gynecology, University Hospitals, Cleveland, OH.
Objectives:
The purpose of this study was to identify factors with uniquely high prevalence in vulvodynia-Ehlers-Danlos syndrome comorbid patients in order to identify patients who may need referral and to better understand management of this population.
Methods:
This cross-sectional study was conducted in January 2025 using the TriNetX Platform Global Collaborative Network Database with statistical comparison of vulvodynia-Ehlers-Danlos comorbid cohort and vulvodynia non-Ehlers-Danlos cohort. Bonferroni correction was performed due to analysis of 100 demographic, associated condition, and treatment factors with statistical significance at p = .0005.
Results:
Five hundred seventy vulvodynia-Ehlers-Danlos patients and 49,457 vulvodynia non-Ehlers-Danlos patients were identified with a mean age of 39 and 48 ( p < .0001), respectively. Vulvodynia-Ehlers-Danlos comorbid patients had more frequent chronic pain, musculoskeletal, neurologic, gynecologic, immune, and psychiatric conditions. Vulvodynia-Ehlers-Danlos patients had higher rates of most nonsurgical interventions but similar vaginal estrogen ( p = .0412) and vulvar surgery rates ( p = .4249). Vulvodynia-Ehlers-Danlos patients had signs of more frequent medical contact with more post-op visits, vaccines, and inpatient admissions ( p < .0001). Study limitations are those inherent to the TriNetX database, with ability to see associations but not causation.
Conclusions:
Clinicians treating genital pain have a role in the treatment of vulvodynia-Ehlers-Danlos patients given the array of prevalent pelvic conditions. Clinicians should keep the high rate of muscular, neurologic, and immune conditions in mind when evaluating the vulvodynia etiology in this population, as well as the higher rate of gynecologic comorbidities, which could result in hormone-mediated etiology from chronic estrogen use. With a higher rate of mood disorders, mental health inquiry is also important.
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