I remember the first time “it” asserted itself. I was a young teen hanging out with my cousin in our clubhouse. We were sitting on the floor cutting pictures from fashion magazines, and I decided I would run in the house for a cold drink. I rose onto my knees to stand, and with the precision of a surgeon’s scalpel a searing, lightning-quick pain cut me through the pelvis, down my tailbone, and then radiated down both my thighs.
“Are you okay?” my cousin asked as I knelt in the floor gasping.
“I think I just have bad cramps,” I choked out as I struggled to stand.
I hoped it wouldn’t happen again, but over the next few months it happened again and again. I would be going about my business when that same incapacitating pain would bisect me like a razor, causing me to break into a cold sweat and making the room spin. It wasn’t long before the pain progressed from when I was menstruating to every single day of the month.
I knew what it was.
My mother and my grandmother had both had surgery for it. My aunt by marriage missed days of schooling due to it.
There was even a name for the dread condition: endometriosis. My mother had lost an ovary to it and spent months recuperating on the couch.
But in a repressed family like mine, you didn’t acknowledge that you have periods, much less reproductive organs. You bore it quietly and didn’t make a fuss because if you acknowledged the pain, you were acknowledging your sexuality—and in our family, nice people didn’t have sexuality.
So I shut my mouth. I took ibuprofen by the handful and I curled up in a ball in my room, shaking as the knives tangoed through my pelvis. If I even tried to broach the subject at home, all I got was a firm shake of the head from my mother.
“I really don’t want to have to have a conversation with your father about it so please be quiet,” she’d huff.
By the time I got to college, I was having trouble carrying my books across campus because the pain was so overwhelming. I made an appointment with a doctor and wept as I explained the years of debilitating symptoms I’d been having.
“It sounds like you have endometriosis,” she said as she conducted a pelvic exam. “Your uterus is tilted to the left because of all the adhesions. I imagine you’ll have difficulty getting pregnant.”
She said with strong symptoms and a positive family history, her practice often treated endometriosis empirically, diagnosing without the benefit of surgery for confirmation. She explained that unless I wanted surgery in the middle of getting my degree that I had two options: oral contraceptive pills or a drug called Lupron which would temporarily cause my body to go into menopause.
I opted to go with oral contraceptive pills first because the side effects seemed less troublesome, especially in conjunction with my family health history. Within one month of usage, the difference was so huge that I was functioning like any other girl at college. Anytime I tried to share my story at home though, I was abruptly cut off. Mom was glad I sought help, but she was too uptight to want to know anything about what was wrong or how I was treating it.
When I moved to a new town after graduation, my new ob/gyn told me to never ever put endometriosis on my health history, and she gave me a new one to fill out as she resolutely shredded the one I’d handed her. She told me that insurance companies would use the diagnosis in their favor and refuse to pay for all manner of treatments down the road. We documented “cramps” on my history since I was only taking the pill and hoped I’d never progress to the point where I needed surgery.
My symptoms were mostly controlled until I had my first child nearly a decade later. My ob/gyn said many women have an easier time managing endo after bearing a child and if I wished to come off the pill, I’d probably be just fine. Within three months of going off my medication, I was in such agony that I could barely work. My rounds on patients were interspersed with me doubling over between rooms and fellow nurses asking me if I needed help. I called my doctor and explained my situation. She promptly put me back on the pill.
It hasn’t been a good journey, but it has been easier than many women’s paths. I’ve been controlled with medication. I haven’t needed surgery like my mother or grandmother. I became pregnant easily twice with no intervention to make it happen. I’d like to say that endometriosis hasn’t defined me, but there were times where I let it, times where I let some form of unknown family shame silence me and enhance my suffering. I still don’t have perfect days. The pain is there, but it’s mild and bearable compared to what I used to suffer. I no longer spend days in bed, and I try to encourage and educate other women about the condition.
I watch my preschool daughter with apprehension for her future. I’m the third generation in my family to bear this condition, and I hope she’s inherited her health from her father’s side of the family. But things will be easier for her regardless. In a few short years, we’ll begin talking, and she’ll know what to look for. There’s no shame in this condition, and she’ll grow up with no embarrassment regarding her body.