Endometriosis is a silent epidemic globally affecting an estimated 10% of women of reproductive age. Endometriosis is a medical condition characterized by the growth of tissue similar to the uterine lining outside the uterus. Although endometriosis is prevalent among women, Black women are notably affected due to intertwined social, systemic, and medical issues. Misunderstandings about pain tolerance, implicit bias, and institutional racism frequently lead to misdiagnosis or delayed diagnosis in Black women. The presence of these disparities underlines the urgent need for improved awareness, research, and early detection to avert serious complications.

Endometriosis Risks

Endometriosis presents several risk factors that can significantly impact a woman’s life. One of the most prominent is the increased menstrual flow that many women with this condition experience. This heavier flow necessitates the use of more menstrual products, which can exacerbate the burden for those already grappling with period poverty. Period poverty, defined as the inability to afford basic menstrual hygiene products, is a global issue that disproportionately affects low-income women and girls. This issue is further compounded by endometriosis, adding an economic layer to an already complex health crisis.

The burden of period poverty varies significantly by region. To gain a better understanding of the extent of period poverty in your state, you can refer to this interactive map.

Endometriosis can also affect other body functions, leading to a range of additional health problems. These can include issues with bowel, urinary, sexual, and reproductive functions, all of which can significantly impact a woman’s overall quality of life.

A common misconception associated with endometriosis is that it significantly increases the risk of developing cancer. However, research has shown that while endometriosis may be associated with a slight increase in certain types of cancer, it does not significantly increase the overall endometriosis cancer risk.

Disparities in Health and Endometriosis

Disparities in health outcomes are a pressing concern in the field of endometriosis. A staggering 90% of women with endometriosis report being dismissed or disbelieved by healthcare professionals. Despite its broad prevalence, Black women are disproportionately affected due to a complex interplay of implicit bias and systemic racism. Black women with endometriosis often have delayed diagnoses or are misdiagnosed as a result. Complicating diagnosis, Black women’s endometriosis symptoms can be mistaken for uterine fibroids. Racial disparities underscore the need for increased awareness, research, and early diagnosis to prevent severe complications. Socioeconomic barriers and lack of representation in the medical field further exacerbate these disparities, emphasizing the need to address these issues for equitable health outcomes​.

This inequity in health outcomes is further worsened by systemic issues within the healthcare system. Black mothers and their babies face poor health outcomes, and Black women who use hair relaxers are found to be more susceptible to certain types of reproductive cancers.

The Journey of Black Women with Endometriosis

For Black women dealing with endometriosis, the journey towards diagnosis and treatment is often convoluted and fraught with additional obstacles. A lack of studies on endometriosis among African Americans contributes to a higher rate of misdiagnosis, even when symptoms are consistent with those exhibited by white patients. This, in conjunction with a lack of physicians able or willing to perform the definitive diagnostic surgery, can cause significant delays in diagnosis and treatment.

There’s also a disturbing trend of racial bias in pain perception and treatment. Studies show that many white doctors perceive Black patients as less sensitive to pain, often leading to inadequate treatment for the pain that is a cardinal symptom of endometriosis. As a result, the pain endured by Black women can be dismissed or downplayed, an insidious effect of the intersection of racial and gender bias in healthcare.

Endometriosis can coexist with other health conditions that disproportionately affect Black women, such as uterine fibroids, heart disease, strokes, diabetes, depression, and anxiety. This overlap of health conditions can complicate the diagnosis and management of endometriosis, leaving these women particularly vulnerable to poor health outcomes.

The Power of Legislative Action

Beyond medical care, one of the most effective ways to address endometriosis is through advocacy and legislative action. Policies such as menstrual pain leave can significantly alleviate some of the burdens faced by those with endometriosis, as seen in countries like Spain and others. In the US, Connecticut Rep Jillian Gilchrest is championing this cause, leading an Endometriosis Working Group aimed at expanding access to care. You can learn more about her work and how to support it here. At a national level, The Endometriosis CARE Act would provide awareness, research and other means through the Department of Health and Human Services.

Hope and Advocacy

If you or someone you know is grappling with period poverty, there are resources available. You can find a bank near you, or make a donation to help people in need. You can also find active menstrual legislation in your state and reach out to your representative to let them know you support it, or ask for supportive legislation where you live. 

With increased awareness, research, and advocacy, we can begin to dismantle the barriers that hinder the diagnosis and treatment of endometriosis, especially for Black women. By addressing these systemic issues, we not only give these women the healthcare they deserve, but we also ensure a more equitable future for all women living with endometriosis.

The fight against endometriosis and period poverty is an ongoing battle, but it’s one we must continue to wage. It’s our collective responsibility to ensure that no woman has to suffer in silence.