Perceptions and Experiences Regarding Quality of Life amongst Black Women Diagnosed with Endometriosis

Full Description: Endometriosis impacts an estimated 10% - 15% of women of reproductive age in the United States and Europe ( Denny 2007;Bertero and Grundstrom, 2017). The condition is characterized by the presence of endometrial tissue outside of the uterine cavity and can lead to chronic pelvic pain, heavy menstrual cycles, infertility, pain during sexual intercourse, and overall lower quality of life (Denny, 2009; Young et al., 2014; Cox 2003).
There is little research on how endometriosis impacts an individual's life beyond their physical symptoms. An overabundance of endometriosis research focuses on the physical symptoms of the disease (Cole et al., 2021). Therefore, there is a need to understand the lived experience of people diagnosed with endometriosis including management of non-physical symptoms, and changes to their identity or other parts of their lives. Further, although a large body of research on the experiences of women diagnosed with endometriosis exists, the historical focus on the condition was initially only in White middle-class women (Bougie, 2019). As a result, there is a need to explore the impact of endometriosis on quality of life, particularly for US-born Black women, specifically considering the historical inattention and disregard for Black women’s pain within research.
This study will aim to fill this gap by exploring the experiences of Black women diagnosed with endometriosis. A purposive sampling technique was employed for recruitment of participants. In-depth interviews were conducted with 16 women. Using an inductive approach, open coding was done, and preliminary themes were uncovered from codes. Participants discussed themes of dismissiveness from healthcare providers in the negative experiences, and positive experiences included women feeling heard by healthcare providers and being able to exemplify self-advocacy, quoting that “you can't-you can't give up because if you give up, nobody's gonna start fighting for you like you fight for yourself.” The impacts of endometriosis on their quality of life as related to womanhood and fertility were also discussed, with one participant quoting “it [endometriosis] makes you kinda resent your body...it [endometriosis] makes you question yourself as a woman.” Further analysis will seek to examine the experience history of endometriosis, quality of care, and impacts of these experiences on overall quality of life. Black Women have unique individual experiences to share considering the historical context behind pain assessment. The implications of this study may contribute to improved patient care and an increase in cultural humility among providers when dealing with this condition. Additionally, study findings could help policy makers understand the sociodemographic factors that may contribute to a delay in diagnosis and a lowered quality of life among this population, which may then help to reduce the misconceptions regarding this condition and rates of misdiagnoses.

Abbreviated Description: Endometriosis impacts an estimated 10% - 15% of women of reproductive age. The condition is characterized by the presence of endometrial tissue outside of the uterine cavity and can lead to chronic pelvic pain, heavy menstrual cycles, infertility, pain during sexual intercourse, and overall lower quality of life. Although a large body of research on the experiences of women diagnosed with endometriosis exists, the historical focus on the condition was initially only in White middle-class women. This study will aim to fill this gap by exploring the impact of endometriosis on quality of life, particularly for US-born Black women, specifically considering the historical inattention and disregard for Black women’s pain within research.