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Black Women and Endometriosis

Black Women and Endometriosis

The first endometriosis drug in 40 years may be available within five to seven years. The drug dichloroacetate (DCA) is already used by cancer patients to stop the proliferation of cancer cells. A small group of human patients suffering from endometriosis who were treated with DCA reported lessened pain and better quality of life. As someone who has suffered the symptoms of this disease for decades, this news has me overjoyed and hopeful—and worried. While I am thrilled that doctors and researchers are finally doing something to address this painful and debilitating condition, I worry that because it’s so hard for Black women to have their “endo” diagnosed, there are many who might never get access to the drug at all.

Endometriosis is a gynecological condition that affects 190 million girls and women globally and 11% of women in the United States. On average, it takes anywhere from seven to 12 years for someone to be diagnosed. Endometriosis occurs when the lining of the uterus, the endometrium, grows outside of the uterus. Symptoms include pain (painful menstrual cramps that may worsen over time, chronic pain in the lower back and pelvis, intestinal pain, pain during bowel movements and sex), bleeding and spotting in between periods, infertility, and digestive issues (bloating, nausea, vomiting, especially during periods). People with this condition have a decreased quality of life due to depression, anxiety, and fatigue, and debilitating pain can prevent them from going to work or school. There is no cure, and it is usually treated with over-the-counter medication such as ibuprofen and naproxen, extended or continuous use of birth control, or surgery.

I got my first period at age 11, and the pain was unbearable. The products normally marketed for period pain like Midol or Pamprin never worked for me. Birth control did nothing. At one point, a doctor prescribed me a muscle relaxer and Tylenol with codeine. I found out the hard way that I have an intolerance to codeine: it made me sicker. The only thing that seemed to bring about some relief was taking ibuprofen – perhaps more than the recommended amount. I went the alternative route at one point and tried herbal teas. Nothing. Whenever I saw specialists, it would be difficult for me to describe the pain. It wasn’t a sharp pain, but it wasn’t dull either. I just knew it hurt. And not being able to describe the pain effectively made me feel like I’d failed a test and would never get the relief I needed.

Black women are 50% less likely to be diagnosed with endometriosis compared to white women, in part because they experience medical gaslighting in the form of racism and sexism that delays a diagnosis. There is a misconception that this condition is a “white career woman’s” disease and therefore is less prevalent among Black women. This contributes to delayed diagnosis of endometriosis in Black women, who are diagnosed with endometriosis on average two and half years later than white women.

Medical gaslighting of Black women is related to colonialist ideas about Black women and their bodies. Marion Sims, known as the “father of gynecology,” experimented on enslaved women in Alabama during the 1840s. This experimentation was rooted in the idea that Black people were insensible to pain and could withstand hard labor according to Sims’ colleague, Samuel Cartwright. However, this misconception is not a thing of the past. A 2016 study of white medical students and residents showed that at least 50% endorse some false belief about Black people and pain (e.g., “Black people have thicker skin than white people”). Moreover, this same study showed that those who endorsed these beliefs were also less likely to provide accurate treatment recommendations.

According to one nurse, I “just had bad cramps,” the medical term for which is dysmenorrhea. But I didn’t just have “bad cramps.” The pain would be so excruciating, I would have thoughts of harming myself, hoping that I would be taken to the hospital, and they would be forced to give me pain medication for the injury. I was always bloated. I hated the nausea. I couldn’t really keep anything on my stomach, and sometimes I would make myself vomit to try and feel better. The pain wasn’t relegated to just my stomach. My back would also hurt. Sometimes worse than my stomach. Sometimes the pain seemed to jump from my back to my stomach. I would miss school or work for at least two or three days, or suffer through the day by shaking my leg, holding my stomach, and moaning through the pain. One day, I was shaking so badly that a colleague told me I was shaking the floor. Because that was the only thing that brought me any kind of relief, I stayed in pain the rest of the day. Despite having all the symptoms of pain, digestive issues, and internal signs of endometriosis, I have yet to be diagnosed.

There are surgical and non-surgical procedures to treat endometriosis, such as ultrasounds, MRIs, and laparoscopies. A laparoscopy is a minimally invasive surgical procedure that involves a camera being inserted through a small incision in the stomach, and it’s considered a definitive method of diagnosing endometriosis. For example, someone may be in the advanced stages of endometriosis, but present with no symptoms or may be in the early stages and present with symptoms. Black women however, are more likely than white women to experience complications related to surgical care for endometriosis.

Doctors need to seriously listen to Black women about their pain sooner rather than later. No one should have to wait years for relief. Researchers need to fund clinical studies on menstrual pain and endometriosis among Black women so that more Black women are included in these drug trials and have access to pain medication that effectively reduces their pain.

I am hopeful that because DCA is already on the market this drug will soon be available to those suffering from endometriosis. But I am skeptical that it will be available to everyone who needs it. If racial disparities continue to exist among women in the diagnosis of endometriosis, then no drug is progress unless Black women have access to it.

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