Meet the non-profit leaders, activists, and founders taking meaningful action to ensure menstrual equity for all. Today, we’re talking with Lauren Kornegay, founder of ENDO Black, and member of the LOLA Collective. After her own painful experience of dealing with endometriosis, Lauren created ENDO Black as a platform to connect fellow sufferers to each other for support. Her goal is to not only raise awareness in the community about women of color affected by endometriosis, but also to educate doctors and medical professionals about how to better recognize and care for them.
Here’s a typical LOLA icebreaker: tell us your first period story.
When I was 12 years old, I remember walking in front of my mother and aunt on our way to church. At some point, she let out a big scream saying, “Oh no, I’m not ready.” I had accidentally sat in a piece of chocolate that my mother thought was a period bloodstain. I didn’t start my period that day, but from that moment on, I was nervous about what that experience would be like.
I was a late bloomer, starting later than the other girls in my Girl Scout Troop and school. It started one week before my birthday, and I remember crying in the bathroom because I thought I did something wrong.
Once my period did start, I dreaded it. I was always in pain, slumped over or curled up in a ball. My mother would break up half of a pain reliever, crush it, and put it in my applesauce. It was always irregular. When I left for college, I thought I’d mastered everything about womanhood. I soon learned that it was the beginning of another chapter in my life that led me to my diagnosis with endometriosis.
When you were in college, you were finally able to name the pain you were suffering from: endometriosis. What were some of the experiences that led you to that discovery?
In college, my cycles felt more intense than what I was used to. There were more pain and more irregularities, but I thought it was normal. Once, while I was a senior at Morgan State University, my period had ended, but returned two days later and hit hard on the same day as my midterm presentation. I’m so thankful for my professor, who understood and allowed me to go home because I had bled through my dress.
My cycle continued for another couple of days, but because of my fear of hospitals, I tried to avoid going for as long as I could. I finally went to the emergency room, was given medication to relieve my pain and was told to follow up with my OBGYN. I found a doctor in Baltimore, MD, named Dr. Que. Dr. Que made me extremely comfortable, and I was honest about my past experiences with my reproductive health. Everything I shared with her — pain in my knees before and after my cycles, sharp pains in my back and abdominal pain — didn’t sit right with her. She also did a Pap smear and determined that I had a retroverted uterus, which is a common symptom. A retroverted uterus means the uterus is tipped backward so that it aims towards the rectum instead of forward, towards the belly. On March 18, 2011, I had laparoscopic surgery that confirmed an endometriosis diagnosis.
We’ve heard many stories from the LOLA community about how difficult it is to get diagnosed with endometriosis. Because women’s health is such an underfunded area of clinical study, many women are initially dismissed or misdiagnosed. Did you experience any confusion, misinformation, or dismissal on your journey?
There have been so many horrifying stories that I’ve heard since being a part of the endo community. I was one of the lucky ones. I wasn’t dismissed or misdiagnosed like many women were. Also, I don’t hold the doctor or hospital accountable for any misinformation I received because I know how misunderstood endometriosis is. We’re still learning about it. I will say that after being officially diagnosed, I didn’t receive much information on how to properly manage endometriosis. That’s why I became an endo advocate. I am working towards awareness and support for those affected by endometriosis. I am grateful that I was taught to speak up for myself because there have been many times after being diagnosed that I was gaslighted or had my pain dismissed. I had one medical professional tell me that endometriosis was only in the womb. Another one called me to tell me that they didn’t know what was wrong with me and there was nothing else they could do. And I believe that many women have experiences that are way more disturbing than mine.
What was your reaction to your diagnosis? Were you scared? Relieved?
My reaction to my diagnosis wasn’t anything spectacular. I didn’t fully grasp the severity of endometriosis at the time. I also didn’t fully understand what endometriosis was — that it would have a huge impact on my everyday life.
Your approach to activism is built around “creating space where there is no space.” How did that mantra guide you in starting ENDO Black?
As a young child, my mother always encouraged me to never complain without having a resolution because it was wasted energy. If there’s a void, fill it. This guided me in founding ENDO Black, Inc. because I knew it was time for a change. I was connecting with so many women, listening to their stories and experiences, hearing all their needs, and trying to help everyone. It was overwhelming. This led me to create a Facebook page, then an Instagram account, a newsletter, and it just kept growing. I would ask the endo community what they needed and what they expected from ENDO Black. Then I’d create more and more things because the endo community had a void and I wanted to work on filling it.
Let’s talk about the organization you’ve built. What is the mission of ENDO Black, and how is it addressing the problem of representation within the endo community?
ENDO Black, Inc. was founded in October 2015 on the principle of advocating for African American women and women of color affected by endometriosis. Since then, we’ve connected with over 6,000 women and men through our social media platform, our private Facebook support group, and our newsletter. It’s a beautiful thing to see women openly discuss their diagnosis and how they’ve been able to manage it, especially in the African American community, where we’re taught not to talk publicly about our cycles. We’re seeing more African American women speak up and become advocates, more discussion from big names in the endo community on the lack of awareness and more information sharing to assist women who look like me with getting a proper diagnosis. Though our focus is to raise awareness about endometriosis among African American women and women of color, we are an inclusive organization and we welcome all. We understand how it feels to be left out and would never want anyone else to feel that way.
What is your vision for the organization long term?
For ENDO Black, Inc., the sky’s the limit. Our focus will always be to support and provide a safe place for those in need. We want to expand and host more events across the United States, and eventually around the world. We’re looking at growing our Ambassadors Program to have more people represent us in more areas. Our ENDO newsletter will continue to thrive with the help of our incredible team. We are also looking to get more involved with community outreach and connect with young adults and young ladies to raise endometriosis awareness. Last but not least, we want to focus on policy and legislation changes.
Lastly, do you have advice for someone struggling to find community and support after an endometriosis diagnosis? How can someone get involved with ENDO Black?
If you’re struggling to find support, the best place to go is Facebook. There are a large amount of Facebook groups dedicated to endometriosis awareness. But be mindful of certain groups — you want to find one that is positive and uplifting. Also, when Googling, do your research and be aware that what may work for one person may not work for you. Everything is a process. For those who are interested in getting involved with ENDO Black, Inc., reach out to us via email@example.com.