Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis

Endometriosis is currently poorly understood by the medical sciences; contemporary healthcare has been evidenced as failing to meet the diverse needs of the women who live with the condition. This study examined women’s experiences of navigating knowledge and power within medical encounters for endometriosis. In-depth interviews were conducted with twenty-six women who have been diagnosed with endometriosis about their experiences of the condition and associated healthcare. Women valued both their own knowledge and their doctor’s clinical expertise; as to which they privileged was situational but it was essential the woman dictated which it would be. Women were wary of the social status and power of doctors to reduce their wellbeing through medical labels they did not identify with or by inhibiting their access to care. They identified the need for doctors to listen to and believe them as being essential to the provision of healthcare that meets women’s needs and addresses the complexities of endometriosis. Our findings suggest that medical education needs to equip doctors with the skills to acknowledge and incorporate women’s knowledge of their bodies within the medical encounter, and to understand how their practice affects women’s social and economic participation.