High rate of dyspareunia and probable vulvodynia in Ehlers–Danlos syndromes and hypermobility spectrum disorders: An online survey

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.

Clinical trajectory of hypermobile Ehlers–Danlos syndrome/hypermobility spectrum disorders in older adults

“…Supplemental Digital Content 1 (Table 1, http://links.lww.com/JAANP/A215) shows the characteristics of the included studies. Six studies were conducted in the United States (Alomari et al, 2020; Bergl et al, 2019; Glayzer et al, 2021; Murray et al, 2013; Schubart et al, 2019, 2022), four in France (Baeza-Velasco et al, 2021; Bénistan & Martinez, 2019; Hugon-Rodin et al, 2016; Kalisch et al, 2019), two in Belgium (Coussens et al, 2021; De Wandele et al, 2014), two in Italy (Castori et al, 2015; Puledda et al, 2015), and one in the Netherlands (Scheper et al, 2016). Two studies were retrospective reviews (Alomari et al, 2020; Schubart et al, 2019), two were longitudinal (Coussens et al, 2021; Schubart et al, 2022), and one each case–control (Puledda et al, 2015), prospective case series (Bénistan & Martinez, 2019), and individual case report (Bergl et al, 2019).…”

“…Eight studies used in-person clinical assessments or questionnaires (Baeza-Velasco et al, 2021; Bénistan & Martinez, 2019; Castori et al, 2015; Coussens et al, 2021; Hugon-Rodin et al, 2016; Kalisch et al, 2019; Puledda et al, 2015; Scheper et al, 2016). Four studies used only postal or internet surveys (De Wandele et al, 2014; Glayzer et al, 2021; Murray et al, 2013; Schubart et al, 2022). The remaining studies extracted data from existing records (Alomari et al, 2020; Bergl et al, 2019; Schubart et al, 2019).…”

“…The sample sizes ranged from 1 (Bergl et al, 2019) to 1,146 (Glayzer et al, 2021). The sample mean ages ranged from 31.2 (Castori et al, 2015) to 57 years (Bergl et al, 2019).…”

An online survey of pelvic congestion support group members regarding comorbid symptoms and syndromes

“…They found a higher rate of vulvodynia vs published incidence for the general population (50% vs 8%) in the EDS/hypermobility group, and high rates of fibromyalgia, TMJ dysfunction, and mast cell activation syndrome. 39 The same weaknesses of self-reporting were considered to be balanced by access to a large group of patients 40 with an uncommon condition. Indeed, Facebook now has billions of users and many thousands of medical support groups that are increasingly seen as a valuable resource for medical and public health investigations.…”

Whither social media and clinical genetics?

“…Social media offers many benefits and advantages to practitioners and researchers. In addition to being a tool for general information gathering about the field and for learning about how genetic conditions affect people (Kelleher et al, 2015), online social media platforms have become essential elements of recruiting participants to genetic studies (Coffin et al, 2022; Glayzer et al, 2021; Reaves & Bianchi, 2013; Vlaskamp et al, 2019), forming support groups (Krabbenborg et al, 2016), surveying health care professionals regarding genetic evaluations and practices (van den Heuvel et al, 2021), understanding family communication about genetic information (Leighton et al, 2021), and enabling patient engagement with genetic counselors (Yabumoto et al, 2022), among many applications. In fact, as many genetic conditions are individually rare (Ferreira, 2019), social media offers unique and often rewarding ways to bring geographically far‐flung patients, families, clinicians, and researchers together.…”