“Pap smear horror stories, self loathing, feeling like I was less of a woman”: A qualitative content analysis of an online vaginismus forum

Abstract

Objective: To understand what concerns and experiences people with vaginismus share online anonymously but may not share with clinicians. Methods: Two researchers compiled all comments and posts made from November 2019 to April 2020 within an online vaginismus forum ( n = 311) for content analysis. Two researchers separately performed inductive coding, categorized quotes into overarching categories and codes, and resolved inconsistencies with a third-party adjudicator. Results: Our analysis highlighted three key categories: “psychosocial concerns” (34%), “discussion of pain” (33%), and “lack of access to vulvovaginal healthcare” (34%). The category “psychosocial concerns” comprised of the codes “shame and/or social isolation” (12%), “mental health comorbidities” (9%), “fear of partner separation” (7%), “cultural/religious stigma” (2%), “partner separation” (2%), and “fear of infertility or vaginal delivery” (1%). The category “discussion of pain” comprised of the codes “successful therapies” (16%), “sexual pain” (9%), “nonsexual pain” (6%), and “unsuccessful therapies” (2%). The category “lack of access to vulvovaginal healthcare” comprised of the codes “lack of standardized therapy guidelines” (8%), “self diagnosis” (7%), “fertility testing and/or treatments limited by vaginismus” (5%), “clinicians dismissing symptoms” (4%), “inadequate clinician knowledge about vaginismus” (2%), “inadequate health and sex education in schools” (2%), “geographical barriers” (2%), and “COVID-19” (2%). Conclusion: This novel qualitative study of an online vaginismus forum highlights the need for a patient-centered approach to inform future research, medical education, and clinical practice. Our findings suggest we reevaluate the standard of care for patients with vaginismus and expand on existing knowledge of the impact of sexual health stigma on social and health outcomes.