Reconceptualising Endometriosis: Multiple Enactments and the A-Diagnostic Category

Abstract

Endometriosis, a chronic disease that affects about 1.5 million women in the UK and 176 million women worldwide, is defined as the placement of endometrial-related tissue outside the uterus. It is characterized by painful menstrual periods, chronic pelvic pain, infertility, and pain during sexual intercourse. It has an average time to diagnosis of 7-10 years.

This thesis is based on an ethnographic study conducted primarily in the United Kingdom, which shed light on how health professionals and patients negotiate endometriosis. Utilizing Annemarie Mol’s (2002) concept of disease ontology, this thesis explores the interplay between the multiplicities of endometriosis and the a-diagnostic category, a novel concept that I develop, with hopes of contextualising the struggle to access care for this condition. There are several reasons for a patient’s movement into the a-diagnostic category. Historical understandings of menstruation and of the uterus limit what is presently considered endometriosis. Stigmatized notions of endometriosis and a ‘lay-professional epidemiology’ of the disease used by gynaecologists impede access to diagnosis. Interference with obtaining the endometriosis label can also be seen in the endometriosis movement, despite its advocating for women’s gaining one unifying label. Teenagers, women of lower socio-economic status and of colour, and non-heteronormative/non-cis patients struggle to attain the endometriosis label. Enactments of endometriosis in the gynaecology clinic, as well as outside of it, are multiple and often clash over inclusion in or escape from the a-diagnostic category.

This thesis contributes to understandings of an underexplored, gendered, embodied experience of the disease, the effects of the extended delay to diagnosis, and the tensions around the endometriosis diagnosis. It is a context that is crucial for understanding the disease, its symbolic meanings, and for formulation of improved care of those suffering from endometriosis.