She is dedicated to fostering change and recognition for people with the disease.
Myendometriosissymptoms started when I was around 13.
I didnt know anything was wrong and that mysymptomswerent normal.
Lauren Renee Kornegay
Growing up as an African American woman, we did not have conversations about our cycles and periods.
Getting a Diagnosis
I felt isolated in my early experience with endometriosissymptoms.
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.
Dr. Que immediately said, This is not normal at all, and scheduled a diagnosticlaparoscopy.
Fast forward to my surgery, and I received an official endometriosis diagnosis at age 20.
However, as I discovered, diagnosis is just the beginning.
After my diagnostic laparoscopy, I was told that I had acystand was put on birth control.
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.
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.
It motivated me to start asking questions.
I joined Facebook groups, searched hashtags, read studies, and more.
She is the only voice that resonated with me, even in my Facebook groups.
What this shows us is that representation does matter.
At one point, it was thought only to affect White women.
It was called a White womens working disorder.
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.
This is how dangerous and inaccurate information is spread.
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 thateveryonehas a voice.
We can all make a change.
However, it also highlighted the disparities in information about endometriosis.
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.
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 forflare-ups.
For example, I limit my soy and dairy intake and certain otherfoods.
I also know that my pain is linked to my stress levels, so I work to manage this.
Ive 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.
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 toSarah Bence, OTR/L
Legal Defense Fund.Brown v. Board and the “doll test.”
Bougie O, Nwosu I, Warshafsky C.Revisiting the impact of race/ethnicity in endometriosis.Reprod Fertil.
2022;3(2):R34-R41.
