Platformized Debates on Chronic Pelvic and Vulvar Pain: Between Medical Authority and Patients’ Advocacy

Over the last years, in Italy, digital platforms and social media have taken on a central role in raising public awareness and in prompting processes of destigmatization of diseases and conditions characterized by chronic pelvic and vulvar pain. Although they affect at least one-tenth of all bodies assigned female at birth, obtaining a diagnosis for these diseases and conditions is consistently made complicated, frustrating and time-consuming by the lack of scientific knowledge rooted in a cultural approach that taboos and stigmatizes women’s and people with vulvas’ sexuality and normalizes “female genital” and menstrual pain and irregularities. Within this context, digital platforms and social media have been widely used as spaces for information, mutual support, advocacy, struggle, and resistance against experiences marked by pain and medical, institutional, and social delegitimization of women, trans*, gender-fluid, non-binary people, and, more broadly, people with vulvas. At the same time, it is possible to observe a growing depoliticization and medicalization of these discourses. This is evident in the increasing presence of profiles belonging to medical and psychological professionals who appropriate and repurpose elements of the vocabulary developed by those embodying pain in order to promote information and practices, as well as paid services and private specialized clinics, while obscuring users’ voices and struggles. This research aims to analyze and highlight this tension within discourses and narratives on bodies, health, and needs related to chronic pelvic and vulvar pain as created and circulated by platform users. To this end, a collaborative feminist ethnography was conducted on TikTok and Instagram, adopting a critical approach to the algorithmic structuring of platform-generated content. The study underscores the need for a situated, transfeminist methodological and theoretical approach to knowledge production as a political commitment to recognizing the epistemic value of embodied experiences of power and oppression.