The lack and delay of endometriosis diagnosis in black women

Endometriosis is a chronically painful condition with poor health related outcomes for those diagnosed with it. These outcomes may include chronic pain, infertility, and experiences with stigma, among others. While there is some research available on the experiences of women of color in other jurisdictions, the experiences of women of color in the DC metro area, who have been diagnosed with endometriosis, have yet to be characterized. This study serves to understand how black women and other women of color with symptoms suggestive of endometriosis experience medical racism. This will be done with a focus group from participants from the ENDO-Served study on endometriosis in women of color based in the DC metro area. The research question: are women of color who report discrimination in the healthcare setting more likely to have a lack or delay of diagnosis of endometriosis? The methodology used in this study was a qualitative methodology, done with interviews of women of color with endometriosis. Through these interviews the participants will express their experience with their diagnosis of endometriosis and the treatment they received from their healthcare provider. Results from this methodology will help us to explore a deeper understanding of the perceptions and stigma of this condition. As well as help to develop programs related to reducing barriers as well as time of diagnosis, addressing racism, and stigma, among black and other women of color. This research was conducted with the funding of OSCAR and URSP at George Mason University. The research was overlooked by Dr. Jhumka Gupta a professor at George Mason University, and Julia Mandeville, Ph. D candidate responsible for the study and creation of Endo-Served.

Hello and thank you for coming to my presentation. My name is NeNe Uwaomah and I’m presenting my study are women of color who report discrimination in the healthcare setting more likely to have a lack or delay of diagnosis of endometriosis. My mentor is Dr. Gupta from the Department of Community and Public Health at George Mason University.

Some background from how we got to this topic question; endometriosis is an understudied disorder of the uterus. Endometriosis is a disorder in the female reproductive system that occurs when tissues that normally line the uterus, grow outside of the uterus. It is a chronically painful condition with poor health related outcomes for those diagnosed with it. Endometriosis impacts 1 in 10 women, and is a condition characterized by debilitating pelvic pain and activity impairment that can also lead to infertility. Other than the lack of research into the experiences of women in these populations with endometriosis, there are also disparities in the diagnostic outcomes. Studies have found that Black women were less likely to be diagnosed with endometriosis (OR 0.49, 95% CI 0.2 9 -0.8 3)4, or were more likely to have a delay in diagnosis (µ=2.6 years older (95% confidence interval [CI], 0.5-4.6), when compared to white women(Li, et al, 2021).
The methodology used in the study included both qualitative and quantitative formats. First was an IRB approved Qualtrics survey prepared by Endo-Served. A project developed for the study of endometriosis in women of color in the DC, Maryland, and Virginia metropolitan area. The study identified key similarities between volunteers and their experience with endometriosis and the healthcare system. From the survey, significant numbers showed that discrimination was a factor with the women’s diagnosis along with stigma. From the survey participants a few women volunteered to participate in individual meetings to discuss their diagnosis story and experience in healthcare. Authentication of participants was prioritized. Their identities remain anonymous. It was ensured that the participants were aware of and comfortable with the study design and purpose. The interviews allowed the participants shared their difficulties with their diagnosis, as well as answer questions pertaining to their experience. The questions included;
Tell me your diagnosis story
2. Where did you first hear the word “endometriosis”?
a. Probe for family/friends, social media vs health care provider
3. In our data with ENDO-Served (explain what Endo-served is if they are not familiar), we are finding that women who reported learning about endometriosis for the first time from a family member/friend also reported more experiences with racism in a healthcare setting. Why do you think this is?
a. How, if at all, does this relate to your experiences?
4. What do you think needs to change regarding racism in healthcare settings?

The interviews resulted in similar answers between the four participants. ¾ of the women had to receive second and third opinions as their concerns were not taken seriously enough by their first physician. All of the women experienced excruciating pain, heavy bleedings, nausea, extended fatigue and some experienced problems with childbearing. Each woman explained their difficulties as they did not feel heard by their medical professionals and were stereotyped into the stigma that their pain tolerance was higher as black women. They were made to feel isolated and crazy, resulting in trauma of life alterations. When the women were diagnosed, all had to undergo surgery in order to remove cysts, fibroids, and growths. At the point of diagnosis, the women were in moderate and severe stages of endometriosis.
Most women had just first heard of endometriosis when they were being diagnosed, and those that did not first hear it through diagnosis, had looked up their symptoms through non-formal sources and discovered endometriosis. The cause of endometriosis is unknown, but it is believed to be a genetic or hereditary disorder. There is no cure, but a hysterectomy is the medical recommendation to cease major pain.
The lack of representation in research and clinical studies, is of consequence for women of color in the diagnosis, management and treatment of endometriosis which may result in misunderstanding, misdiagnosis and lack of appropriate treatment options when engaging with healthcare providers. This prompts a need for further research and action on this topic as there are many more women suffering in pain due to insufficient knowledge on this topic. Continued work on this study will help to foster a deeper understanding of the perceptions and stigma of this condition and additionally provide evidence for developing programming related to reducing barriers as well as time of diagnosis, addressing racism, and stigma, and facilitating help-seeking among Black women and other women of color.

Thank you for listening and I would like to also thank my mentors and co-organizers at George Mason University; Dr. Jhumka Gupta, Dr. Anna Pollack, Julia Mandeville, and Lauren Kornegey, as well as all the volunteers for the interviews and survey participants. And of course, a big thanks to Dr. Karen Lee and the undergraduate research scholars program and OSCAR for funding my project this semester.