When Krystal Grimes was 21, she experienced such intense pain she couldn’t walk and she visited the emergency room. Doctors treated her with pain medicine and recommended she follow up with her gynecologist. Her doctor gave her a pamphlet that mentioned endometriosis as a possible reason for her agony. It was the first time she ever heard of it and even after she was diagnosed, she still wasn’t quite sure what that having endometriosis meant for her.
“I had my first surgery in 2009 for endometriosis and that’s when I was diagnosed with stage 4 endometriosis,” Grimes, 36, of Springfield, Massachusetts, told TODAY. “I don’t think at the time I really had a full understanding of everything. It hit me later.”
Her doctor had performed ablation, burning off the surface of the endometriosis, and drained several chocolate cysts, a type of mass with a brownish hue. The doctor noted Grimes might experience problems with fertility but said little else. After, she tried to find others who had it but couldn’t.
“There was really no community that I knew of where people were talking about endometriosis,” she said. “I figured I had to be my own advocate.”
The condition began impacting her more. Frequently, Grimes grappled with bouts of pain that sent her to the emergency room. Then in 2010 when she and her then husband tried to get pregnant, they couldn’t. She went through two rounds of in-vitro fertilization (IVF) and experienced two devastating miscarriages.
“I felt like I was to blame in some ways because my body couldn’t do what I thought all women’s bodies can do,” she said.
While her family supported her, Grimes often felt isolated. Doctors often didn’t acknowledge how painful and debilitating endometriosis was and while she later learned her mom also had it, they didn’t talk about it. Again she turned to the internet for answers and this time she found people with stories like hers.
“I came across Endo Black and it was almost like a sigh of relief,” Grimes said. “Not only was it a community of people with endometriosis but it was also women that identified as African American and people of color.”
Lauren R. Kornegay founded Endo Black as she was grappling with endometriosis. Starting when she was a teenager, Kornegay experienced painful periods, sharp abdominal cramps, nausea, brain fog and migraines. A doctor in 2010 suspected she had endometriosis and a surgery the next year confirmed it. Surgery is the only way to confirm an endometriosis diagnosis and there is no cure. But doctors didn’t tell her much more.
“I never really got any guidance as to what I was supposed to be feeling, any guidance as to what I should be looking for,” the 33-year-old from Prince George County, Maryland, told TODAY. “I still had pain … My doctor never said this was a lifelong disorder.”
About 11% of all people with a uterus experience endometriosis, a painful condition that occurs when the lining of the uterus begins growing outside the uterus, according to U.S. Department of Health and Human Services Office on Women's Health. It can turn into cysts that can grow on the uterus, fallopian tubes, ovaries, bladder and in rare cases has been found on organs outside the pelvis. It causes painful periods, infertility and can grow in such a way that organs fuse together, though symptoms can vary wildly. Diagnosis takes anywhere from seven to 10 years on average.
Kornegay started researching to try to better understand it. As she learned more about endometriosis, something appeared odd. It seemed like a condition that affected white woman. But she soon learned that wasn't the case.
“After I realized there were Black women with endometriosis I’m like, ‘Oh oh, so it’s not just me. OK, well is there an organization that shares this information? How do we this get this information out?’” she recalled.“ The biggest thing (with Endo Black) is just being inclusive and making sure that people get the information. In that knowledge they can make proper decisions for themselves.”
Prior to Endo Black she had joined online support groups, but often felt her experiences seemed different than others in the groups. For example, Kornegay knew that Black women often used different beauty products and their skin was more likely to be dry. She wondered how differences such as that changed how Black people experienced symptoms of endometriosis.
“There was a lack of women of color, there was a lack of African American women,” she said. “We don’t all have the same experiences and it can be quite difficult, especially with going to the emergency room or going to see a doctor, especially when there is a health inequity that exists.”
Endometriosis and people of color
While awareness of endometriosis has increased recently, it has been historically considered “a disease of white and affluent women,” according to a preprint paper examining racial differences in when people receive endometriosis diagnosis. A meta-analysis from 2019 found that Black people receive an endometriosis diagnosis less often than white people.
“It takes twice as long for women of color, specifically Black women to get that diagnosis of endometriosis because of the widely-held, inaccurate belief that Black women are automatically more fertile,” Julia Mandeville, 32, a doctoral student in public health at George Mason University, told TODAY. “Then with the stigma associated with us being fantasized as sexual beings — it could be that you’re too sexually active so you have an STI, which is contributing to your pelvic pain.”
Mandeville has endometriosis and co-founded the Barbados Association of Endometriosis and PCOS in her home country to raise awareness and encourage better treatment of endometriosis and other gynecological conditions. She started following Endo Black on Instagram and when she moved to Northern Virginia for graduate school, she felt pleased to learn that Kornegay lived near her.
“We connected and our relationship grew,” Mandevile said. “Endo Black is serving as a safe space for women of color that have endometriosis, helping women who have endometriosis to really find a collective voice to share these experiences.”
Growing the reach
In addition to providing Black people with space to talk about endometriosis and learn from others, Endo Black also hosts events both online and in person. On March 26 to 27, it’s hosting its annual conference at the Harborside Hotel in Oxon Hill, Maryland. While the organization is mostly active in the Washington, D.C. metro area, Kornegay plans to eventually launch chapters in different cities around the country.
“The end goal is to raise awareness for African American women or just people in general who have endometriosis,” she said. “We have five different committees. Within those committees we talk about outreach efforts. We talk about information, newsletters … There may be opportunities to look into policies as well as research.”
The Ambassadors program, which Grimes participated in, allows people to share their experiences. Opening up about her story has been transformative.
“I’ve had women share with me that they have endometriosis and they are feeling alone. I’ve had people come and confide in me when they were dealing with a miscarriage and not knowing how to feel and what to do,” Grimes said. “It just opened a whole other level of satisfaction that I don’t think I would have found had I stayed quiet. Every time I get an opportunity to share my story it is a humbling moment.”
Grimes had a rainbow baby, MaKayla Elise Frank, now 7, and believes that Endo Black has empowered her — and that the group can help others best advocate for their health.
“It wasn’t until I got connected to Endo Black that I was given the information that as a patient you have these rights. You can advocate for yourself and that doesn’t mean you’re a difficult patient,” she said. “It doesn’t mean that you’re angry Black woman. It means that you know your body and know something’s wrong.”