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Anything but Endo: Diagnostic Buck-Passing in Endometriosis Diagnosis
Rita Dexter1, Megan Kitts2, Heather Welty3
1Department of Sociology, Rice University, Houston, Texas, USA.
Abstract:
People living with endometriosis, a disease in which tissue similar to the lining of the uterus grows elsewhere in the body, often experience prolonged diagnostic journeys because of symptom variability, normalisation of period pain and other symptoms, and lack of awareness of the condition. In this article, we analyse the endometriosis diagnostic journey through the lens of epistemic injustice. Drawing on in-depth interviews with 52 people living with endometriosis in the United States, we introduce the concept of diagnostic buck-passing to characterise the phenomenon wherein individuals who seek treatment for their symptoms end up stuck in a cycle of seeing different providers across ranging specialities, which ultimately delays their diagnosis. We describe diagnostic buck-passing and the conditions that give rise to its emergence, grounding our conceptualisation in endometriosis diagnosis. Utilising concepts of undone science and wilful ignorance, we demonstrate how endometriosis diagnosis becomes a site of hermeneutical injustice due to a long history of underinvestment in women's health research and resultant knowledge gaps in clinical care.
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