Misdiagnosis and Neglect: The Endometriosis Experience Of Black Women

For years, I’ve been grappling with excruciating pain, fatigue, and other debilitating symptoms. Dismissed as normal menstrual discomfort, my struggles intensified over time. Sometimes I’d get a “that’s what comes with endometriosis, I’m so sorry.” Seeking medical help proved futile as doctors downplayed my symptoms or attributed them to unrelated conditions. Despite persistent agony, I was met with skepticism and indifference.

Endometriosis, a condition where uterine lining cells grow outside the uterus, affects 6.5 million women in the U.S. alone. According to research, one in ten women live with endometriosis. However, the journey to diagnosis and treatment is often riddled with challenges, especially for Black women. Rooted in a history of medical bias and systemic neglect, the experiences of Black women with endometriosis highlight deadly and unjust disparities in healthcare.

Endometriosis, illustration. A condition in which the endometrium, the layer of tissue that normally covers the inside of the uterus, grows outside of it.

Diagnosis & Treatment

Despite its prevalence, misdiagnosis and delayed diagnosis persist, amplifying the suffering and frustration endured by Black women and women of color. According to Contemporary OB/GYN, Black women are 50 percent less likely to get an endometriosis diagnosis than their white counterparts. It takes on average 8-10 years for Black women to get diagnosed. In my healing journey and the process of sourcing information, I’ve found that there’s little to no research on how the condition affects Black women specifically.

I was fortunate to get diagnosed at 17 during an emergency laparoscopic surgery. I was rushed to the ER due to debilitating pain in the lower abdomen. Once I arrived at the ER, they conducted tons of tests including an ultrasound where the doctors believed to have found a torsed ovary. The only way to fix it is through laparoscopic surgery – “a minimally invasive procedure that looks inside your stomach or pelvis.” But for the majority of Black women a diagnosis this early is not seen often.

After the emergency surgery, I attended a post operation appointment where the specialist gave me a brief overview of endometriosis, prescribed a progesterone contraceptive, and gave me a pamphlet with more information on endometriosis and how it could impact my life. The post op appointment felt like I went to the mechanic. There was no warmth in the approach to care or even the language used by the doctor. I felt defeated and like I should just listen to the doctors because they must be right, because they’re doctors after all looking after my well being. False.

Impact on Daily Life & the Denial of Black Pain

Endometriosis infiltrated every aspect of my existence, jeopardizing my career, relationships, and mental well-being. The relentless pain and uncertainty cast a shadow over my aspirations and happiness. Endless doctor visits yielded ineffective treatments, prolonging my agony. Statistics mirror my experience, revealing a disturbing trend of delayed diagnosis and inadequate care for Black women with the condition. Now as a passing mixed woman there are certain privileges I hold that of course impact my care differently. It’s important to note that forces such as colorism, misogynoir, and racism go hand in hand with the negligence Black women face in healthcare.

I was tired of being gaslighted by doctors who were giving the same courses of treatment: birth control and pain medication. Refusing to accept dismissive attitudes, I advocated fiercely for comprehensive testing and tailored treatment. Empowering myself with knowledge became essential in navigating medical neglect. And it was through my own research and tenacity that I found the alarming rates of Black women whose symptoms are ignored, and the importance of nutrition and alternative health practices. The emotional toll of enduring pain and neglect cannot be overstated. Frustration and despair often overshadowed hope as I battled against a healthcare system that failed to see my suffering.

Overall, women’s health and pain are not addressed nor taken seriously. This also affects non-binary and trans people born with a uterus. Studies have shown that women’s pain is often ruled as hysteria or labeled as overemotional. This belief coupled with the belief that Black people have higher pain tolerances lead to Black women’s pain going untreated and dismissed. For decades, white doctors have believed that Black patients don’t experience pain the same as their white counterparts. Racial bias in medicine has impacted our pain treatment to high Black maternal and infant mortality rates.

Pain is the most common symptom of endometriosis alongside inflammation. Pain can occur during and after sex, throughout your cycle, bowel movements and during your period. Some people who live with endo experience lower back pain that shoots down their legs alongside pelvic pain. As you can imagine, a person who lives with endo can be in pain chronically. Dismissive attitudes toward women’s pain and overall Black people’s pain, have left Black women unseen and undiagnosed. 

Misdiagnosis & Overlapping Illnesses 

Considering the broader spectrum of health issues that disproportionately affect Black women, the impact of system biases become more evident. The oversight is compounded by the prevalence of overlapping illnesses like fibroids, which also disproportionately affect Black women. Fibroids, noncancerous growths in the uterus, share symptoms with endometriosis and PCOS, such as pelvic pain, heavy menstrual bleeding, and infertility.

The misdiagnosis of endometriosis and fibroids among Black women can be attributed to various factors, including racial biases in healthcare, inadequate access to quality healthcare, and cultural stigma surrounding discussions of women’s health issues. Research indicates that Black women are less likely to receive timely and accurate diagnoses for gynecological conditions compared to their white counterparts. Additionally, healthcare providers may downplay or dismiss the symptoms reported by Black women, leading to delays in diagnosis and treatment. This systemic neglect of Black women’s reproductive health contributes to their disproportionate suffering and underscores the urgent need for healthcare reform and advocacy efforts aimed at addressing racial disparities in women’s healthcare.

For people who have uteruses, a lot of reproductive illnesses have overlapping symptoms that often lead to misdiagnosis. Racial bias has led medical professionals to perceive Black patients as more resilient to pain. The intersection of race and gender amplify the perception that Black women are not experiencing severe pain. 

Finding Support & Advocating For Yourself

After a decade of battling my worth for adequate care, I decided to take matters into my own hands through educating myself, seeking alternative health practices, and seeking community with online communities such as Endo Black Inc, Endo Fund, and Resilient Sisterhood Project.

Discovering solidarity in support groups and online communities proved invaluable. Connecting with fellow Black women navigating similar struggles provided solace and strength in times of despair. In my journey I’ve come to find that within my community more than 2 out of 10 Black and brown women have endometriosis. Sharing stories with other Black women reinforced the shared reality of medical neglect and ignited a collective call for change. Representation and awareness emerged as potent tools in dismantling healthcare disparities.

Advocating for oneself as a Black woman in the doctor’s office is essential given the systemic biases and disparities in healthcare. Firstly, educating oneself about common health issues affecting Black women, such as endometriosis and uterine fibroids, can empower individuals to recognize symptoms and articulate concerns effectively. Additionally, it’s crucial to communicate openly with healthcare providers, expressing any discomfort, pain, or concerns without fear of being dismissed or overlooked. Be persistent. Seeking out culturally competent healthcare professionals who understand the unique needs and experiences of Black patients can also improve the quality of care received.

Through my journey I’ve learned that requesting documentation after a doctor dismisses your requests, will not only apply pressure to the doctor but it will also ensure you have a paper trail documenting neglect and dismissive behavior. Furthermore, don’t hesitate to seek a second opinion or request referrals to specialists if necessary. Lastly, documenting symptoms, appointments, and interactions with healthcare providers can help track progress, identify patterns, and advocate for appropriate treatment. By asserting one’s agency and actively participating in healthcare decisions, Black women can better navigate the complexities of the medical system and ensure their voices are heard and respected.

Embracing Self-Care and Holistic Approaches

Exploring treatment options and embracing holistic approaches became pivotal in my healing journey. Empowering myself with knowledge and making informed decisions empowered me to reclaim control over my health. I’ve learned that for my body, I must balance western medicine with holistic practices. I’ve recently found an incredible Black gynecologist who is aiding my healing journey with nutrition and movement tips. Everybody is different and of course our care plans are individual to our bodies. But here are some of my recommendations:

– Incorporate low-intensity, high-impact workouts into your routine. Activities like yoga and pilates, which can be easily accessed through free online resources, not only help to balance cortisol levels but also strengthen the pelvic floor, offering relief from endometriosis symptoms.

– Advocate for imaging tests such as ultrasounds to monitor the progression of endometriosis. Having visual evidence can aid in understanding the extent of the condition and guide treatment decisions.

– Prioritize nutrition by researching foods that may exacerbate endometriosis symptoms and eliminating them from your diet as much as possible. A balanced diet can play a significant role in managing symptoms and overall well-being.

– Consider alternative therapies like acupuncture to complement traditional treatments. While it may be a financial investment, acupuncture has shown promise in alleviating endometriosis-related pain. If acupuncture isn’t feasible, explore somatic breath work and somatic workouts as accessible alternatives.

– Consult with your healthcare provider before starting any new supplements, but consider incorporating omega-3 fatty acids, magnesium, and evening primrose oil into your regimen. These supplements have been reported to offer relief from endometriosis symptoms for some individuals.

Embracing self-care practices and prioritizing holistic wellness fostered healing from within. Nurturing my body, mind, and spirit became essential in overcoming the traumas of medical neglect. In celebrating victories, no matter how small, I find resilience and hope for the future. Each triumph over adversity serves as a beacon of light in the darkness of uncertainty.

Conclusion
Reflecting on my journey, I am struck by the resilience and strength cultivated through adversity. Despite the obstacles, I persevere, fueled by a vision of a future where Black women receive equitable healthcare. Increased awareness, advocacy, and support are crucial in bridging the gap in healthcare disparities.  

I envision a future where all Black women receive timely diagnosis and comprehensive treatment for endometriosis. As I share my journey, I invite others to join me in advocating for change and fostering a future where healthcare justice is a reality for all. My journey has inspired me to be a resource to other Black and brown women who share my diagnosis and struggle. I founded Womxn’s Intuition with the mission to make nutrition, womb healing, and birthing safe and accessible for Black women. Follow me on Instagram @lesvargass for more on how i’m managing and healing endometriosis naturally. 

Book Recommendations:

Beating Edo: How to Reclaim Your Life from Endometriosis by Iris Kerin Orbuch, MD and Amy Stein, DPT

Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson

Resources:

– Papers: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=383803

– Women’s Health: https://www.womenshealth.gov/a-z-topics/endometriosis#:~:text=Endometriosis%20is%20a%20common%20health,the%20United%20States%2C%20have%20endometriosis.

– Contemporary OB/GYN: https://www.contemporaryobgyn.net/view/how-raceethnicity-influences-endometriosis

– National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078174/

– National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/

– Cleveland Clinic: https://my.clevelandclinic.org/health/procedures/4819-laparoscopy

– Yale Medicine: https://www.yalemedicine.org/conditions/ovarian-torsion#:~:text=An%20uncommon%20but%20serious%20condition,in%20the%20organ%20to%20die.

– Forbes: https://www.forbes.com/sites/janicegassam/2020/09/22/misogynoir-the-unique-discrimination-that-black-women-face/?sh=3655175956ef

– Harvard Global Health Institute: https://globalhealth.harvard.edu/racial-bias-in-medicine/

– UVA Frank Batten School of Leadership and Policy: https://batten.virginia.edu/about/news/black-americans-are-systematically-under-treated-pain-why