National Endometriosis Awareness Month: My Story

In honor of National Endometriosis Awareness Month, I’ve decided to share my endometriosis story.

Endometriosis is a chronic illness affecting the endometrial lining of the uterus that causes it to spread throughout a woman’s body. It typically affects older women, but I am 27 and developed endometriosis at age 14.

The first time anyone could tell I had endometriosis was when I was a young high schooler. When I was 14, I bled onto the Youth Pastor’s leather car seat in a Cadillac full of boys. In my youth group I was the only girl, and I was in excruciating pain – and embarrassment. Not to mention I was the Preacher’s daughter, and Preacher’s daughters are to be perfect and not unclean.

We were on our way to a regional convention for our denomination to compete in various disciplines, from bible knowledge to puppetry, and were being quizzed on the book of Ruth in the car. Eventually we stopped at a rest stop on our way to Dallas and we saw the seat was doused in blood. The endometriosis was imminent.

My periods have always been unpredictable. This is a symptom of endometriosis. Age 14 was no different. I had previously bled through at a dentist office to be shamed by the dental hygienist for not knowing my cycle by now, to which my mother yelled at her, “Her periods are irregular!” Thankfully, we both always kept overnight maxi pads on us.

But where was my mother now? She got out of the car and noticed I was woozy, unsteady on my feet, and practically carried me to the bathroom after apologizing to the Youth Pastor, who thankfully had grown daughters. In this gross roadside bathroom stop, I screamed over the toilet as fibroids came flowing out of me. This was the first time in my life I thought I was going to die, endometriosis would claim me, and I begged mom to take me to the ER. She said no, we were on our way to a Jesus conference, and He came first. I needed to learn that.

I was sick and lightheaded the whole time I was there. We didn’t win gold in Bible Quiz. I mostly blamed myself and mom for that. What I didn’t know was that it was really endometriosis’ fault.

To my good mother’s credit, after Easter when we arrived home, she immediately took me to a Gynecologist. They ordered an ultrasound, the noninvasive way to test for endometriosis, and sitting in the lab I was afraid people would think I was pregnant as I downed glasses of water. I was as skinny as a string bean, but suffered from an eating disorder that made me feel as if I was the size of the moon. I went into the ultrasound, and I swore I could hear the technician laughing. I’m sure he wasn’t, but I was 14 and not used to the medical world that would soon become my whole life.

In two weeks, the doctor phoned us in to tell me I had endometriosis and polycystic ovary syndrome. My records have since been lost and no one believes the endometriosis part, but I was recently re-diagnosed with polycystic ovary syndrome.

I do know that the endometriosis diagnosis was real because my mother was there when the doctor talked about the lining found in my ultrasound. She talks about it, and my grandmother and great-grandmother also had endometriosis.

The doctor quickly prescribed birth control pills and the endometriosis improved. However, eventually they stopped working, and I was given a Mirena IUD.

I experienced pelvic pain similar to when I first developed endometriosis, and over the course of six months learned that my body was rejecting the IUD.

I’m now on the Kyleena IUD, and once again, my endometriosis is improving. The tricky thing about endometriosis s that it is fickle – it can love you one day and hate you the next.

According to womenshealth.gov, endometriosis “may affect more than 11% of American women between 15 and 44.” 11% of American women, this is for you. May you feel less alone in your endometriosis journey.

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