“Am I crazy?” : A Black woman’s journey with endometriosis

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By Kellyn Walker, a clinical research coordinator in Dallas, TX.

Endometriosis is defined as a painful disorder, where similar tissue that lines the uterus grows outside of it. This tissue acts like uterine tissue, causing pain and discomfort typically around the time of menstruation, but can occur in-between periods. As a Black woman, I’ve suffered with severe pain, bleeding and cramps, since I was 10. My cycle was a source of fear and the pain would be debilitating.

The older I got, the more I resolved that I was experiencing a consequence of womanhood and complaining about it was unnecessary. So, I took my Midol, got on birth control, and kept my pain silent. I stayed on this path until I was 20, when faking normalcy wasn’t possible.

The faking stopped when I passed my first massive and painful blood clot. I passed blood clots before, but nothing like this. Four months of spotting and constant pain followed. At my breaking point, I made an appointment for an ultrasound. I laid there and watched the technician’s expressions change and heard the whispers in the hallway after she got up. My gynecologist explained that I needed exploratory surgery. She said she would probably find nothing, that the surgery would be 30 minutes, and that I had nothing to worry about.

Stage 2 Endometriosis

My surgery was scheduled a few months later and the pain intensified. Surgery day came, and I woke up 1.5 hours later, with my pelvis swollen and on fire. Stage 2 Endometriosis fell quickly from my doctor’s lips, and that was it. It would take 4 years and 3 surgeries for me to get the treatment I needed.

After my first surgery, I was given pain medication and taken off my birth control to give my body a break. I recovered over a month, and had stitches in my belly button, on my stomach, and on my pelvis. Six months later, I had an IUD (intrauterine device) placed. I was given more pain medications, and left to deal with this condition with no guidance or treatment plan. 

“I was treated unfairly, as a liar, and my pain was dismissed.

Later, I moved to Texas and had to find a new gynecologist. The first doctor I found didn’t acknowledge my endometriosis diagnosis and instead diagnosed me with Dysmenorrhea. This diagnosis only covers pain during menstruation. My symptoms and proof that I had endometriosis went unheard and the pain continued. Due to the pain, I developed heat burns on my stomach, thighs, pelvis, and back. I had more narcotics and opioids than I needed. I had ER bills from visits that resulted in painful and invasive pelvic exams, doctors thinking I was a pill seeker, and more prescription medications because “that’s what I came in for.”

Other times, due to the false stigma that black woman experience pain differently, I was treated unfairly, as a liar, and my pain was dismissed. My worst experience occurred when a “specialist in endometriosis,” told me, in spite of the two laparoscopic diagnoses, that my pain was all in my head and that I needed depression medication and Lyrica to alter my mental state. I sat there appalled, angry, and defeated. He was the specialist, but I refused to give up. So, I went back to begging my gynecologist for another surgery. Finally, she agreed.

“Am I crazy?” Stage 3 Endometriosis

By God’s grace, a more knowledgeable doctor was assigned to perform that surgery. It was another 30-minute surgery turned into a 2.5 hour surgery that removed lesions and scar tissue that was adhering to my organs. With a new diagnosis of Stage 3 Endometriosis, the first question I asked when I woke up was, “Am I crazy?”. A “no” followed and so did a three-month recovery. After surgery, I changed my gynecologist to the one that performed my surgery. They started me on Orilissa—an endometriosis specific medication—and started pelvic floor physical therapy. Eventually, I was weaned off of consistent pain and nerve medication. This Black woman finally had a treatment plan. 

My journey is shorter than most, but this isn’t the entire story. I am still struggling as my endometriosis progresses, but I listen to my body and know when to ask for help as I manage it. If you are reading this and you have painful periods, heavy bleeding, bleeding or pain between periods, ask for a laparoscopy. Or if you experience blood clots, pain with intercourse, severe cramping, or ovulation pain, ask for a laparoscopy. If you experience irregular cycles, food intolerance/digestive issues, or back/leg pain, ask for a laparoscopy. Ask questions, do research, fire your doctors, and fight for your health.

There is no cure for endometriosis. It’s an invisible illness. There is no one-size-fits-all treatment plan. March is Endometriosis Awareness Month, and I hope my journey has opened your eyes to this condition and how difficult it can be to walk this journey. For those struggling, I want you to know there is help out there, you are not alone, and your body deserves to know more than just pain.  

Follow Kellyn Walker on Instagram: @theendomainfesto.

 Editor’s note: Roughly 6.5 million women in the United States suffer from endometriosis.