The (under)diagnosis of endometriosis: epistemic and affective injustices in the medical niche

This paper examines the systemic underdiagnosis of endometriosis as a case study of how the medical niche scaffolds epistemic and affective injustices against cisgender women. Drawing on Fricker’s concept of epistemic injustice and emerging work on affective injustice, we analyze how the socio-material environment of healthcare – including social isolation from peers, medical technology, and legacies of medical sexism – impedes both patients’ understanding of their condition and healthcare practitioners’ ability to effectively respond. We argue that the significant diagnostic delay for endometriosis (6–9 years on average) results not merely from individual practitioner failures but from structural prejudices embedded within the medical niche itself. In response to these injustices, many women turn to alternative techno-social niches – online communities and digital platforms – where they can regain epistemic and affective agency. These are spaces that offer valuable epistemic resources and community recognition, though they also present risks of misinformation. We conclude by advocating for finding common ground between these niches to both enhance women’s agency and reimagine endometriosis care, emphasizing the importance of epistemic humility in the medical profession and recognition of patients’ experiential knowledge as a legitimate form of knowing.