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How I Coped With Endometriosis by Building Community

Meet the Author

Lauren Renee Kornegay, founder and executive director of Endo Black Incorporated, is a trailblazer advocating for Black women and all women of color living with endometriosis. She is dedicated to fostering change and recognition for people with the disease.

My endometriosis symptoms started when I was around 13. During my high school years, I experienced heavy bleeding and terrible cramps, to the point that my mother would break up Percocet (oxycodone and acetaminophen) and put it in applesauce for me to eat. I didn’t know anything was wrong and that my symptoms weren’t normal.

Growing up as an African American woman, we did not have conversations about our cycles and periods. The attitude was that it’s just pain, and you must deal with it, take some ibuprofen, and get through it.

Getting a Diagnosis

I felt isolated in my early experience with endometriosis symptoms. Things came to a breaking point when I was in college. My gynecologist, Dr. Que, was the first person to ask me to describe my periods. Nobody had ever asked me that before.

I told her about sharp pains in my legs, knee, stomach, back, chest, and abdomen and bruises on my inner thighs. Dr. Que immediately said, “This is not normal at all,” and scheduled a diagnostic laparoscopy.

Fast forward to my surgery, and I received an official endometriosis diagnosis at age 20. However, as I discovered, diagnosis is just the beginning.

Confusion and Overwhelm After Diagnosis

Back then, I did not know how to advocate for myself and what questions to ask. For example, nobody told me what stage of endometriosis I had, the severity of my endometriosis, or what type of surgery was done: ablation (burning away diseased tissue) vs. excision (surgically removing tissue).

After my diagnostic laparoscopy, I was told that I had a cyst and was put on birth control. However, I received no information about how to handle the cyst, endometriosis, or what I could expect going forward.

The months after my endometriosis diagnosis were overwhelming.

A few months later, when I turned 21, I decided to go on a health kick. One morning, I woke up, had an avocado toast, and went for a run. I felt extremely out of breath and was disappointed in how out of shape I must be. What I later learned was that I had ruptured my cyst during that run.

Over the next couple of days, I passed out multiple times, always after using the restroom. One time, I passed out in front of my friend and barely missed hitting my head on a wall. My friend urged me to go to the emergency room.

In the hospital, my friend advocated for me and urged the health professionals to take me seriously. I ended up having emergency surgery when the ruptured cyst was discovered, and they found 2 gallons of blood in my abdomen.


Beginning to Ask Questions

That whole experience so soon after my endometriosis diagnosis was upsetting, depleting, and confusing.

It motivated me to start asking questions. Even though I had a diagnosis, and somebody had listened to my initial symptoms, there was no conversation afterward about important topics like how to manage endometriosis pain, what to do if a cyst ruptures, and more.

I think that the lack of support that I received after diagnosis is a result of widespread confusion about endometriosis as a disease.

Due to the lack of information available to me after my diagnosis in 2011, I endeavored to educate myself. I joined Facebook groups, searched hashtags, read studies, and more.

Representation Matters

In 2011, after my diagnosis, the only person I saw advocating for endometriosis who was African American like me was actress Tia Mowry. She is the only voice that resonated with me, even in my Facebook groups.

Representation is important because we’re all different, from the way we are perceived to the kinds of foods we eat culturally. There is a fascinating study from 1947—when schools were segregated—by Mamie and Kenneth Clark at Howard University, where they did the “doll test.”

They looked at which dolls (Black or White) the Black children in the study preferred to play with, and the majority of children preferred White dolls and thought of them as more beautiful and positive.

What this shows us is that representation does matter. If you don’t see yourself, you will never know whether you can be affected by something and how to succeed or overcome whatever you are going through. In my case, I didn’t realize that endometriosis could affect me or what I could do about it after my diagnosis.

Even though endometriosis has been written about in medical literature since 1860, it’s a complex disorder, and our understanding of it is evolving. At one point, it was thought only to affect White women. It was called a “White women’s working disorder.” That is a slight to African American people, all people of color, and also to White women who do not work.

There was also the misconception that endometriosis only required treatment if a woman was trying to get pregnant.

We now know that all of those statements are wrong. Endometriosis is a full-body disease. It affects Black women and people of all races and professional backgrounds.

Creating Endo Black for Community and Advocacy

I did not see myself represented in the endometriosis community, so I created my nonprofit, Endo Black. It started as an Instagram page and has grown to a 501(c)(3) tax-exempt organization.

At Endo Black, we break down stigmas about endometriosis and raise awareness that it affects African American women, too.

For example, in 2020, I learned that five hospitals in the United States had pages on their websites that listed being a White woman as a risk factor for endometriosis. Usually, these hospital websites are built by web designers without medical knowledge who copy and paste information they find online. This is how dangerous and inaccurate information is spread.

Together with April Christina, Samantha Denäe, and Kyla Canzater—members of the Black Advocates of Endometriosis (BAE) and Coalition, whom I had grown close to through my journey with endometriosis—we took action.

We contacted the hospitals, and they were very receptive to updating their websites. This was a pivotal moment for us; we realized we had a voice. This also means that everyone has a voice. We can all make a change.

However, it also highlighted the disparities in information about endometriosis. The idea of endometriosis as a “well-to-do,” professional White woman’s disease dates back to a theory that Joe Vincent Meigs, MD, developed in the 1940s and ’50s. Yet, these outdated ideas still affect our healthcare access today.

Over the years, I have had access to doctors of all races and had good and bad experiences. Some of my best experiences have been with Black doctors and nurses. However, I have also had Black doctors dismiss and ignore me.

Race does matter in the sense of feeling connected to a doctor. However, I believe that if the narrative that has been perpetuated throughout history about a disease is not accurate, then the color of the doctor doesn’t matter if they believe that narrative.

Any doctor can have a bias—whether ageism, classism, sexism, racism, or another ism—that negatively affects patients.

My Endometriosis Today

I have learned so much throughout my journey with endometriosis. These days, I am much more aware of my body, symptoms, and triggers for flare-ups. For example, I limit my soy and dairy intake and certain other foods. I also know that my pain is linked to my stress levels, so I work to manage this.

I’ve also learned about endometriosis as a disease and how to advocate for myself. With my nonprofit Endo Black, I want to make others’ experiences easier than my own.

One thing we are doing right now to work toward that goal is the Empowering Endo Sistas campaign, which focuses on educating African American women to become active patients with downloadable resources, including questions to ask your doctor before surgery and a symptom checklist if you suspect endometriosis. So many people aren’t aware that endometriosis is a full-body disorder, not just a fertility or period disorder.

As a nonprofit, we also work with other organizations to look at the laws, policies, and procedures that affect everyone with endometriosis—not just African American women.

If You Have Endometriosis

If you have been diagnosed with endometriosis, it is imperative that you extend yourself grace. You cannot learn it all in one day. The researchers and the health professionals have not learned it all in one day.

This disorder was first identified in 1860, and its definition is still evolving. Be kind to yourself, seek community, and be strong and advocate for yourself to your healthcare providers.

As told to Sarah Bence, OTR/L

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