Black Women’s Experiences of Reaching a Diagnosis of Endometriosis

Abstract

There is a growing body of research exploring women’s experiences of endometriosis, however, no existing research has focused specifically on Black women’s experiences of endometriosis and getting the diagnosis, despite recent reviews indicating that Black women may be less likely to be diagnosed (Bougie et al., 2019) and that they may be diagnosed at an older age (Li et al., 2021) than their White counterparts. This qualitative study aimed to explore Black women’s experience of getting a diagnosis of endometriosis in the UK. Eight women who self-identified as Black participated in semi-structured interviews to provide insight into their experiences. Interpretative Phenomenological Analysis was used to analyse the interviews, and four main themes were developed: “The diagnosis journey was a battle”, “Navigating stigma and discrimination”, “The diagnosis is a double-edged sword”, and “Finding ways to survive post-diagnosis”. These themes reflect the challenges the participants experienced in getting the diagnosis and how these experiences were shaped by their intersecting identities of being Black and female. The findings also highlighted how many of the challenges experienced in relation to their healthcare and living with endometriosis continued post-diagnosis. The findings are discussed in relation to the limited existing research on Black women’s experiences of obstetrics and gynaecological healthcare, undertaken mainly in the US, and it is considered how this current study can provide a novel insight into Black women’s experiences of endometriosis within a UK setting. Clinical and policy implications and recommendations for further research are discussed.