Paper short abstract:

This paper looks at results from an ethnographic study that shed light on how health professionals and patients negotiate endometriosis in the UK. Results show that women with endometriosis, lack trust in their doctors due to multiple experiences of not being believed.

Paper long abstract:

Endometriosis, an epidemic and a chronic disease affecting over 176 million women worldwide, is defined as the ectopic placement of endometrial-related tissue, and is characterized by extremely painful menstrual periods, chronic pelvic pain, pain during sexual intercourse and infertility.

This ethnographic study, conducted in the North-East of England, shed light on how health professionals and patients negotiate endometriosis. Methods utilized include: semi-structured and unstructured interviews of 35 women and 30 medical professionals, participant observation, and use of online materials.

Results of the study show that lack of trust remains a key issue determining the relationship between women with endometriosis and their healthcare providers. Women with endometriosis often feel that they are not believed by treating professionals. Hence their clinical interaction and relationship lack trust.

Women with endometriosis experience multiple episodes of being dismissed in clinic visits. Due to these multiple negative experiences with doctors, women with endometriosis report hesitancy in accessing new doctors as well as concerns that doctors are not to be trusted with certain kinds of information. The findings suggest that women with endometriosis' experiences of being 'fobbed off' are linked to: 1. Difficulty in receiving a diagnosis, and 2. Stigma linked to endometriosis.

The clinic visit then remains a space where women with endometriosis often lack trust in their doctors.