Endometriosis is a chronic, progressive disease that can significantly affect patients’ quality of life. Researchers think that the disease affects more than 176 million women worldwide. Endometriosis can affect women of every race and ethnicity. But, a lot of misinformation is still prevalent due to cultural and medical biases.
The complexity of endometriosis diagnosis
Endometriosis is one of the most misdiagnosed and underdiagnosed diseases that can affect women of reproductive age. A proper diagnosis of endometriosis requires access to several tools. These include previous medical history, imaging techniques, and excision surgery followed by histological diagnosis. This is the gold standard treatment for the disease that the highly skilled surgeons at Seckin Endometriosis Center use.
Further complicating the diagnostic process is the fact that endometriosis does not have a uniform prognosis. It occurs in different stages in different people with varying symptoms. Endometriosis can also be present with or mask itself as ovarian cysts, pelvic inflammatory disease, fibroids, or even ovarian cancer.
The lack of awareness about the disease among patients and doctors also contributes to delays in diagnosis and treatment.
Prejudices about endometriosis and ethnicity
The bias in diagnosing and treating endometriosis has a historical precedent. Following John A. Sampson’s landmark discoveries about the etiology and pathology of endometriosis in the 1920s and 1930s, Joseph Vincent Meigs, in 1938, first linked endometriosis to the use of contraceptives and late childbearing. This was something that often occurred only in higher society during that era. Meigs also reasoned that incidents of endometriosis were higher among private patients than those in the ward.
In those days, terminologies such as “private patient” and “ward patient” carried an implicit racial undertone, and still do today. Endometriosis was considered to be quite rare among non-white women. Meigs’ theory was in vogue at least till 1976 when African-American gynecologist Donald L. Chatman first published findings that indicated 21% of the 190 black women he had treated had laparoscopic confirmation of endometriosis. Many of these women were wrongly diagnosed with pelvic inflammatory disease (which is usually caused by sexually transmitted infections). This gave further unwarranted credence to the myth that promiscuity was higher among African-American women than their white counterparts.
The diagnostic biases in endometriosis, unfortunately, are persistent even today. Some healthcare workers are still under the impression that endometriosis is basically a white woman’s disease. This belief spills over into real-world clinical practice resulting in black women often not receiving proper pain treatment.
Impact of socioeconomic status
Following Meigs’ observations, it had become apparent that socioeconomic status can influence the risk of developing endometriosis with the disease even being called the “disease of the rich”. Doctors thought endometriosis occurred most frequently in the “class of patients who seek medical care more often” and this mostly meant women in affluent Western societies.
In 1994, W. Y. Low, R. J. Edelmann, and C. Button observed that socioeconomic factors indeed influenced pain reporting. Interestingly, it was women from higher educational level and social status that were found more likely to report an earlier onset and longer pain duration. These patients were also more efficient in communicating their concerns compared to those from lower socioeconomical status.
Recently, a 2019 study by Flores and colleagues, indicated significant differences in usage of endometriosis-related services and medicines based on socio-economic parameters. The study found that women in the public sector were 3.5 times less likely to have a laparoscopy done and 2.7 times more likely to be prescribed opioids or narcotics. The authors also inferred that uninsured or underinsured women with endometriosis are more likely to receive a late diagnosis, have a poor quality of life, and are less likely to receive medical care.
The National Institutes of Health (NIH) is now funding a project by the University of North Carolina to study the diagnostic pathways and pre-diagnostic period among lower socioeconomic status and non-white women in the US. The study will also evaluate factors and symptoms that lead to timely and delayed diagnosis of endometriosis among women.
Current understanding of ethnicity in endometriosis
We now know that endometriosis occurrence does not depend on socioeconomic status. But the exact ways in which race and ethnicity can influence prevalence are still unclear and is the subject of ongoing research.
A study called Nurses Health Study II analyzed relations of demographic, anthropometric, and lifestyle factors in endometriosis. The study analyzed 1,721 women who received a diagnosis of endometriosis between 1989 and 1999. It found that African-American women had lower disease rates compared to Caucasian women.
Another 2019 study did a systematic review and meta-analysis of 22 such available studies on the influence of race or ethnicity on endometriosis. This study also found that black women are indeed less likely to receive an endometriosis diagnosis compared to white women while Asian women have higher rates of diagnoses compared to their white peers. There was also a statistically significant difference in the likelihood of diagnosis in Hispanic women.
Challenges in avoiding bias
There is a pressing need for quality education about endometriosis in the larger society to remove many myths and misunderstandings about the disease.
There is also a large disparity not only in the manner in which endometriosis symptoms present but also in how different racial groups perceive these symptoms. For instance, different ethnic groups have their own psychosocial understanding of the implications and ramifications of common endometriosis symptoms such as chronic pelvic pain.
Due to the still prevalent bias in the medical community that white women have higher incidence rates, a good deal of literature available on endometriosis prevalence still takes into account the disease in white women only and is in the English language, which leads to exclusion of diverse population groups.
Also, black and Hispanic women often have less access to health insurance, health literacy, and overall lower quality of healthcare. This ultimately results in these women being excluded from studies that rely on confirmed surgical diagnoses of endometriosis.
Future research needs to focus more on the social and cultural aspects of the disease. It should also analyze how differential access to quality healthcare results in potential diagnostic and treatment bias.