ArticleAmerican journal of medical genetics. Part C, Seminars in medical genetics2021
High rate of dyspareunia and probable vulvodynia in Ehlers-Danlos syndromes and hypermobility spectrum disorders: An online survey.
Article in American journal of medical genetics. Part C, Seminars in medical genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 25 citations in OpenAlex.
- Comorbid Conditions of Ehlers-Danlos Syndromes and Vulvodynia: A Latent Class Analysis.Pain management nursing : official journal of the American Society of Pain Management Nurses · 2026Article
- Characterizing sexual dysfunction in females with hypermobile Ehlers Danlos syndrome or hypermobility spectrum disorder and genito-pelvic pain through cross-sectional analysis.Rheumatology international · 2026Article
- Interstitial cystitis: a phenotype and rare variant exome sequencing study.EBioMedicine · 2026Article
- Females with hypermobile Ehlers-Danlos syndrome self-report more sexual problems than chronic pain controls without hypermobility, males, or patients with hypermobile spectrum disorders.Frontiers in reproductive health · 2026Article
- Sexual dysfunction in women with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: an online community-based study.Rheumatology advances in practice · 2025Article
- Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey.JMIR research protocols · 2024Article
- Sexual Dysfunction in Postural Orthostatic Tachycardia Syndrome (POTS): A Cross-Sectional, Case-Control Study.Journal of clinical medicine · 2024Article
- Treating pain in patients with Ehlers-Danlos syndrome : Multidisciplinary management of a multisystemic disease.Schmerz (Berlin, Germany) · 2024Review
- Article
- Pelvic Floor Physical Therapy is Self-Reported as a Minimally Effective, and Sometimes Harmful, Treatment for Pudendal Neuralgia: A Cross-Sectional Study.International journal of sexual health : official journal of the World Association for Sexual Health · 2024Article
- Whither social media and clinical genetics?American journal of medical genetics. Part A · 2023Review
- Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review.Frontiers in rehabilitation sciences · 2023Review
- High rate of dyspareunia and probable vulvodynia in Ehlers-Danlos syndromes and hypermobility spectrum disorders: An online survey.American journal of medical genetics. Part C, Seminars in medical genetics · 2021Article
- A scoping review of vulvodynia research: Diagnosis, treatment, and care experiences.Women's health (London, England)Article
Corrections and comments
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Authors and funding
8 authors at 3 institutions in 2 countries.
Funding
Abstract
Vulvodynia is debilitating vulvar pain accompanied by dyspareunia (pain with sexual intercourse). Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) may represent a predisposing factor for vulvodynia given a high rate of dyspareunia in these conditions. We conducted an online survey of women with EDS or HSD to assess rates of dyspareunia and estimate rates of vulvodynia, report rates of comorbid conditions common to EDS or HSD and vulvodynia, and examine rates of conditions contributing to dyspareunia in women with EDS or HSD. Women with EDS or HSD (N = 1,146) recruited via social media were 38.2 ± 11.5 years old, primarily White (94.4%), and resided in the United States (78.5%). 63.7% of participants reported dyspareunia and 50% screened positive for vulvodynia. The rate of comorbid conditions common to EDS or HSD and vulvodynia were: irritable bowel syndrome, 6.5%; fibromyalgia, 40.0%; temporomandibular joint dysfunction, 56.4%; migraine, 6.7%; interstitial cystitis, 1.7%; and mast cell activation syndrome, 10.2%. Participants reporting dyspareunia also reported ovarian cysts, fibroids, or abdominal or pelvic scars, 47.5%; endometriosis, 26.5%; and genital lacerations, 19.3%. Women with EDS or HSD may have a higher rate of vulvodynia (50.0%) than women in the U.S. population at large (8%) and should be assessed for dyspareunia and vulvodynia.
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Registered trials
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