An Illness Without A Name: Part 2

Continued from Part 1. A story by community member Rylee7.

My terrible period pain stayed with me from my teens into my 40s.

I couldn’t make promises or plans with my friends without revealing “WHY” I could not attend social events or parties. I couldn't play sports or take gym classes. But physical education classes couldn’t prepare my body for what was lurking.

The emotional pain of endometriosis

After a few years, the gynecologist explained to me and my mom that my menstrual cycle was not normal, it was a sickness. I thought. "What did I do to deserve this? This is what womanhood is about? I want no parts of this."

I was angry at God for this condition. I felt God did not love me. No one could help me. Midol and over-the-counter medications did not help at all, nor did birth control pills, and I felt like I was doomed for pain and suffering. Folks thought that I was looking for attention because my mom had 7 kids and I was the oldest girl.

Your menstrual cycle is what every female’s body does every month. Endometriosis kept my life on edge because I knew what was coming month after month. By the time I reached my junior year in high school, I was trying to adapt to my life while not knowing what each cycle -- this “monthly illness,” as my doctor called it -- was going to be like, easy or hard.

The physical agony

I was starting to have severe painful cramps and vomiting for all of cycle day 3. I experienced heavy flows, clotting, chronic fatigue, convulsions, painful bowel movements and urination. I also had frequent urinary tract infections, yeast infections, and cysts on my ovaries from the birth control.

Summers were the worst. I would pass out from exhaustion, dehydration, pain and convulsions. I could not hold any food down. Endometriosis would drain me physically and mentally. Was I going crazy? Was I imagining this pain every month? This was my mask, my secret, no one would understand. No one had an answer, no specialist, no drug.

One day I was so sick I had to be taken to the hospital where they gave me an injectable narcotic in my hip. I was not able to keep anything down. I lost a lot of weight every month and was anemic. The injections would work for a while to give me a little relief.

Going through it alone

As the only one I knew who was dealing with this illness, I had to invent my own ways to feel better. I would take cold baths, then hot baths, my doctor said that if I didn’t get help I would be dead by 29. I knew I had to take matters into my own hands. I learned to keep a monthly calendar to track my period, along with foods like sodas, candy, ice cream and chocolate that I craved during those times.

I am sharing my story now because this part of my life was hard and no one was listening. For most of my life I hated living with this and just kept my feelings to myself. It was too hard to find someone who understood. I was sad as a young person and suffered in silence. It was stressful just thinking about my cycle and that the next month was coming, with my condition that had no name.

“This chose me, I didn’t choose this.”

Continued in Part 3.