Vulvar Pain as an Invisible Form of Suffering: Medical Neglect, Cultural Silence, and Self-Medication

Abstract (English)

For one in seven individuals assigned female at birth (AFAB), vulvodynia remains an enigmatic condition that significantly impairs quality of life. Despite its official recognition by the WHO in 2022, vulvodynia continues to be a biomedical mystery, overlooked within healthcare systems, and marginalized in political and cultural discourse. The condition exemplifies how heteronormative norms systematically render vulvar pain invisible, particularly in the context of penetrative intercourse, reinforcing the “male-in-the-head” perspective and normalizing female discomfort.
This research investigates the lived experiences of vulvodynia sufferers, focusing on how medical neglect, diagnostic delays, and chronic pain contribute to a deep sense of vulnerability and mistrust in healthcare institutions. Without standardized treatment protocols, many individuals engage in self-medication—not by choice, but by necessity—turning to pharmaceutical and non-pharmaceutical strategies such as antidepressants, CBD, dietary modifications, and body-based therapies. Peer support networks, especially in digital spaces, function as alternative health infrastructures where sufferers exchange strategies for managing their pain outside traditional medical frameworks.
Based on 12 months of ethnographic research in 2023-2024, including in-depth interviews, five months of online participant observation in patient support groups, and an experimental creative workshop using textile manipulation, this study explores the ways cultural taboos and biomedical epistemologies shape the invisibility of vulvar pain. The artistic component serves as a methodological intervention, challenging logocentric narratives of pain by proposing embodied and sensory forms of representation.
By critically engaging with the medicalization of female sexual health and the biomedical knowledge gap rooted in androcentric paradigms, this research interrogates how gendered suffering is both normalized and contested. Through an analysis of the “penetrable vagina” as a pharmaco-pornographic construct, the paper examines the paradoxical role of pharmaceuticals in reinforcing and disrupting normative gendered embodiments, highlighting how self-medication operates as both survival strategy and site of resistance.