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Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey

Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey

We will discuss the protocol used to recruit participants for an online survey examining dyspareunia, pain during sexual intercourse, in people with vaginas who have EDS. The methods for this study in particular were chosen because of the successful recruitment of 1178 participants in 4 weeks, which enabled the research team to identify that vulvodynia occurs in half of females with EDS [28].

Jennifer E Glayzer, Bethany C Bray, William H Kobak, Alana D Steffen, Judith M Schlaeger

JMIR Res Protoc 2024;13:e53646

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Article has an altmetric score of 2

Ohnut Versus a Waitlist Control for the Self-management of Endometriosis-Associated Deep Dyspareunia: Protocol for a Pilot Randomized Controlled Trial

Ohnut Versus a Waitlist Control for the Self-management of Endometriosis-Associated Deep Dyspareunia: Protocol for a Pilot Randomized Controlled Trial

This disease affects approximately 1 in 10 women and can cause various types of pain, including dysmenorrhea; chronic pelvic pain; and deep dyspareunia, which is defined as pain with deep vaginal penetration [1,2]. Deep dyspareunia is often neglected due to its intimate nature and reservations among both patients and clinicians in discussing sexual health [3,4].

Sandy X J Zhang, Rebecca G K MacLeod, Gurkiran Parmar, Natasha L Orr, Kate J Wahl, Heather Noga, Arianne Albert, Ryan Flannigan, Lori A Brotto, Paul J Yong

JMIR Res Protoc 2023;12:e39834

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Article has an altmetric score of 9

Web-Based Digital Storytelling for Endometriosis and Pain: Qualitative Pilot Study

Web-Based Digital Storytelling for Endometriosis and Pain: Qualitative Pilot Study

Pain that occurs before, during, or after sexual intercourse is a complication of endometriosis that can include superficial dyspareunia (pain at the initial entry into the vagina), deep dyspareunia (pain associated with deep penetration), and musculoskeletal pain (ie, back, hip, and abdomen). When ignored, this can cascade beyond physical pain to result in psychological, sexual, and interpersonal struggles [3-5,7].

A Fuchsia Howard, Heather Noga, Gurkiran Parmar, Lan Kennedy, Sarah Aragones, Roop Bassra, Lauren Gelfer, Edurne Lopez de Arbina, Jessica Sutherland, Catherine Allaire, John L Oliffe, Leanne M Currie, Holly Yager, Paul J Yong

JMIR Form Res 2023;7:e37549

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Article has an altmetric score of 6

Developing an Educational Website for Women With Endometriosis-Associated Dyspareunia: Usability and Stigma Analysis

Developing an Educational Website for Women With Endometriosis-Associated Dyspareunia: Usability and Stigma Analysis

Although pelvic pain is the most common symptom of endometriosis, 50% of women also experience endometriosis-associated dyspareunia—pain experienced during or after penetrative vaginal intercourse [5,6]. Endometriosis-associated dyspareunia affects multiple aspects of life, leading to absenteeism from work, poor interpersonal relationships, and impaired social functioning, and has a profound negative impact on quality of life [7].

Abdul-Fatawu Abdulai, A Fuchsia Howard, Paul J Yong, Heather Noga, Gurkiran Parmar, Leanne M Currie

JMIR Hum Factors 2022;9(1):e31317

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