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My Endo Story: Lauren Kornegay of Endo Black

The first time I passed out was in August of 2011.

That day, I told myself I’m going to be healthy today. I fixed some avocado toast, put on my sports bra and my leggings, and I went running around the block. I left my house feeling ready to be super healthy and energized, but it was the total opposite. I didn’t make it around the block. I stopped my jog, started walking back to my house, and noticed that I was breathing unusually heavy.

My first reaction was to get down on myself. You’re so out of shape. What is your problem?

But then 15 minutes had passed, and I was still gasping for air. I chugged some water and got in the shower, hoping that might help. Then everything turned to black.

At that time, I was alone. I had no idea how severe endometriosis is or how life-altering it would be.

• • •

I started my cycle a week before my thirteenth birthday. Women's reproductive health is not talked about a lot in the African American community, and my mom told me that talking about your cycle is not lady-like, so we never really had conversations about it. By the time I was in high school, my periods got to be so bad that I would be balled up in a fetal position. Even then, the attitude was you just have to keep on moving. Yes your stomach hurts, but you'll be fine.

I attended Morgan State University in Baltimore, MD, and that's where my life shifted.

At Morgan State, we had our midterms and homecoming back to back. I was completely stressed out because for my major, Speech Communication, we did presentations for midterms. I had my dress-up clothes on — I still remember it—this brown dress. I had just finished my period, but that day, I bled through my stockings and my dress. Something weird was going on.

A few days later, I went to the gynecologist. She sat me down and asked me to describe my periods. I told her I have pain in my left knee before my cycle comes on. I have sharp pains in my back; I get abdomen pain, I get pain in my lower back, I get cramps in my lower abdomen area.

When she responded that all of that wasn’t normal, it was the first time I’d even considered that something was wrong with my period pain. I thought that the pain that I felt was normal because they say pain is associated with your menstrual periods, even when you're learning health in school.

The gynecologist performed a pelvic exam and told me I have a reverted uterus, which is a sign or a symptom of endometriosis. A few months later, in March, I had my first surgery. It was a laparoscopic surgery, where they make three incisions by the lower abdomen and one in the belly button.

With endometriosis, instead of tissue completely shedding your body during menstrual cycles, it attaches to different organs in your body. In laparoscopic surgery, there are two procedures that can be done, ablation and excision surgery. I had excision surgery, that’s when the doctor uses a laser to cut off lesions or scar tissue that has been affected by the endometriosis.

Endometriosis can affect your lungs, abdomen, ovaries, cervix, rectum, and so many other organs. There are even people who have endometriosis in the brain, so I consider myself lucky that mine hadn’t spread. During the surgery, the doctor noticed a cyst and prescribed some birth control to try to contain it and stop its growth. But it kept growing.

And then that was it. There were no follow-ups or no explanations of what I should or shouldn’t eat, what I could expect in my life with endometriosis. She said it would take two to three weeks to heal, and I was on my way.

I did what I was supposed to do and took my birth control, but I was still in pain. That’s why that August, I decided to change my life and go on that run around my block.



• • •

Things happen to me in threes.

A few days after I passed out from the run, I was visiting a friend and went to use his restroom. I didn’t recognize at the time that restrooms were triggering me to faint, and, again, I passed out in his hallway. The next day I went to the hospital with my friend Devin. She’s a great friend, and especially with endometriosis or any chronic illness, it’s so important to have a support system because you have people that have your back, no matter the situation.

When we got to the hospital, I couldn’t even get up. Devin pushed back against the nurses because they wanted to leave me out in the open (what’d I tell you about that support system?), so they took me back right away. They needed a urine sample, and in the bathroom, I realized that, again, for the third time, I was about to pass out. I hurried up and left the bathroom, but sure enough, in the middle of the floor, I was looking like noodles. I just collapsed. When I woke up, there were sharp pains burning throughout my body.


They determined that I had a cyst rupture. After surgery, they told me I had two gallons of blood in my abdomen.

To this day, I will not run; I don’t do any heavy lifting or any heavy exercise. After that terrifying experience, I realized that I really had to figure out what was going on and do more research.

I went on Facebook and joined a few groups, but I didn’t feel comfortable or welcomed when I saw people attacking other people in comments when they shared their stories. I went to ask questions about being an African American with endometriosis, and I was hit with responses like “You’re racist. Endometriosis does not care about race.”

• • •

Growing up, seeing people that look like you on television is one thing. But having somebody that has the same disorder as you that you watched on television as a child was crazy. Every time I searched endometriosis, I saw Tia. I searched Black women with endometriosis, and I saw Tia. It made me feel less alone to know that somebody out there — with a platform at that — had endometriosis and was able to talk about it. So many other celebrities have it, but not many talk about it. From the moment I knew about it, Tia was talking about it. It really encouraged me to share my story.


I started Endo Black in 2015. I made a Facebook group, then an Instagram. I created platforms just to share stories and connect people. I'll be honest, I started Endo Black for me to connect with other women. When I recognized that I wasn't the only one that was alone, I knew it was no longer just about me.

Now we have a staff of about ten people. Everybody is Black. Everybody has endometriosis. We all come from different demographics and backgrounds, but we came together because we share a common goal of awareness and making sure that women are really taken care of.

Our mission is advocating for African American women and women of color affected by endometriosis. We create a safe space to create sisterly bonds to implement dialogues on women’s reproductive health in the community. We also focus on regulations, policies, and procedures that affect women who have endometriosis.

We host a “mocktails and cocktails” event every three months that started because of the pandemic. We had one where we talked about the food we are eating. We’re having one where we talk about endometriosis and sex. We’ve talked about skincare, beauty, hair care, vitamins, diet. We have an enformation (with the “e” for endo) newsletter and resources on our website like a map of endometriosis specialists. We are doing an ambassadors program that we had 100 submissions for.

We have our first annual conference coming up on March 19 through the 21st of 2021. It will be virtual, but we are going to really have a great time talking about health equity, motherhood, and endometriosis, business owners with endometriosis, and advocacy for endometriosis.

The best thing you can do is get an endo tribe or a support system. They give you the space and opportunities to be vulnerable, and they’ll understand because they’ve had the surgery you’ve had, they know the ups and downs of life with endo. I want people to feel comfortable enough to come to a place where we talk about these things.



Women with endometriosis are strong to be able to deal with all of this and still be a mom, still be a sister, still be an auntie, go to work and be a friend. We are talking about it. We are our authentic selves. We're not changing who we are to adapt to anything else. We are having these tough conversations out in public. We don't have to hide and say, Oh, no no, no, I got my period today. Girl, you got your period, congratulations.

 

Lauren Kornegay is the founder of Endo Black and the co-host of the V. Podcast. Follow Endo Black on Instagram and register for the upcoming Our Table Virtual Conference (March 19-21) here.