This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
Warning from the author, this story mentions suicide and medical trauma.
I am a poet, an enthusiastic women’s activist, and budding birth doula. My tenacity and empathy are aspects of my personality that I love. Alchemizing tender losses into creative power is second nature to me. Though my ambition hasn’t always been something I could rely on. At many points in my journey, I have thought of my life as unsurvivable. I had insanely painful periods starting at age 11, causing chronic headaches, nausea, and swiftly sharp mood changes. It was obvious early on that my cycle was unstable. My change of personality from age 10 to 11 was noteworthy, which shifted the tectonic plates of my life. I missed the school dances, the friendships, the fun adventures, and my audition with The Juilliard School later into my teen years. I once played classical music, jazz music, saxophone, violin, and piano. Finally, at the age of 16, I had laparoscopic surgery to confirm endometrial growths along my pelvic floor wall. My migraines increased and depression deepened; my tenacity was the last member lost in a corn maze. I was told my symptoms were a multitude of diseases. I endured electro-convulsive therapy, invasive drugs, inpatient wards, all while the unique talents of mine grew quieter. By age 18 I had almost completely lost myself with a couple of anxious episodes.
At the age of 19, I met my husband. He makes my inner musician feel safe, in a space where I can practice instead of perform. With him, I was able to pick up my arts. We had four miscarriages together, and with each, I had severe hemorrhages. I also suffered from significant postpartum depression, which my doctors didn’t believe at the time. It felt like women’s health was the last thing our leaders cared to invest in. We live surrounded by intelligence and innovative mechanics of health in other sectors. People do not know how to respond to stories of losing a baby. My babies will only ever be known by me, and that is truly beautiful.
In my early 20’s I started having gigantic meltdowns that were coming from a cavern in me which I hadn’t yet ventured. I was angry, aggressive, and in the fight or flight response for two weeks on, two weeks off. I was told it was irritable bowel syndrome (IBS), polycystic ovary syndrome (PCOS), and downright infertility. I soon realized this disease is called Premenstrual Dysphoric Disorder (PMDD). PMDD affects around 4% of women across the globe and increases the risk of suicide by nine times. It is ongoingly convenient for doctors to write prescriptions of birth control and gaslight women into believing they are crazy by design. Many sufferers are silenced.
At age 24, I had had enough. I walked into my male OBGYN visit without even saying hello. I handed him a 14-page history of every time I was poked, prodded, tested on, and talked down to by medical professionals. I said, “take my uterus and ovaries and tubes and cervix out of my body.” His told me I didn’t know what I really wanted, was emotional and hormonal, and that my husband might want kids. I looked at the nurse and handed her another copy of the written history. “My husband cares for my well-being. Take. It. All. Out! ” They looked at each other, pale as an embarrassed sunset and scheduled me for surgery the next week.
My horrific cycle of symptoms has lessened greatly after my procedures. I have little problems every now and then. The fight to remove my organs saved my life. We as women are more powerful than our own understanding of it. Though surgery is not the only option or the easier route, it did make a huge difference in my quality of life. While speaking up from our own experiences, we can change the stigma and fear in reproductive health. I am NOT a diagnosis. I deserve to flourish in the wind with grass at my feet.
To all of the women in seemingly endless predicaments, it does get better. Nothing is permanent. YOU are not a diagnosis and never have been!
Versions of this story have previously appeared in many publications, including in the Bear Creek Gazette, Sky Island Journal, Atlanta Review, Crowstep Magazine, among other publications.