I was 27 when I was first diagnosed with endometriosis. For the first decade and a half of my menstruation, I experienced periods that seemed wildly different from my friends. I believed the cause of my pain was “bad periods run in our family.” My periods have been defined by abnormal heavy bleeding, cramps so bad that I would sit in the high school nurse’s office, and missing out on formational life experiences.
For me, heavy bleeding has meant bleeding through a makeshift diaper made out of overlapping overnight pads AND a tampon. It has meant staying back from activities on vacation while I quietly clean my bloody sheets in the sink. It has meant missing out on moments and conversations because I am busy cleaning up another horror scene in the bathroom. It has meant soaking through my leggings all the way down my legs only 40 minutes after I emptied my diva cup. My options have to push through the discomfort, exhaustion, and pain, or feel like a flakey friend for canceling plans last minute again.
My mom had a hysterectomy in early 40’s after decades of pain and exhaustion surrounding her menstrual cycle. She was never diagnosed with endo. When I was diagnosed 3 years ago, she looked through her old medical files and found the words “chocolate cyst” scribbled in. She had endo all along, but never had the sense of relief, comfort, or community that comes with diagnosis. In some ways, my mom and I were diagnosed at the same time, feeling the effects of our silent disease decades apart, yet finding solace together.
The tipping point happened in August of 2021. It was the summer of rescheduled functions post-covid, and I was thrilled to finally attend my class-wide graduation party from grad school. I was in my green wrap dress with my hair done, ready to reunite with my classmates. As I stepped into my heels, hot pain stung my entire vulva. I spent the next 6 hours racing to the bathroom every couple of minutes – first walking, then crawling, then taking up residence on the floor next to the toilet. I debated forcing myself to go, but knew I couldn’t even make it to the train much less survive the hour long subway ride to the event. My phone blew up with “where are you?” texts and smiling group pictures from the class reunion I had waited excitedly for throughout the past year.
The following months were filled with ongoing visits to doctors waiting rooms. With each specialist copay due, I wondered if this was all necessary, or if it was just the reality I needed to accept. I saw my primary care doctor, a urologist, a gastroenterologist, and a gynecologist, each several times. I had a (horrifying) rectal exam, a CAT scan, a cystoscopy, a colonoscopy, endless transvaginal ultrasounds, and finally, my laparoscopic surgery.
My CAT scan came back with results of a mass in my right ovary. With ovarian cancer in my family's medical history, I assumed this must be it. During my first transvaginal ultrasound, I laid anxiously in the dark room with tears rolling down my face as I waited to hear if it was cancer. It wasn’t. The colonoscopy cleared me for surgery, where I was ready to have my endometriosis finally confirmed.
Before I was wheeled into surgery, I was told there was a small chance my ovary containing the cyst could be accidentally destroyed in surgery, but that I shouldn’t worry because my other ovary would be fine if I want to have kids in the future. I knew that it didn’t really matter, because if I did not have the surgery, the cyst in my ovary would continue to expand, and likely explode inside causing sepsis.
During the surgery, they removed the growing cyst, excised my many endo lesions, and set fire to my insides. I was diagnosed with stage 4 endometriosis. Looking at the surgical pictures, my endometriosis is like black mold growing all around and in my uterus, ovaries, urethra, and rectum. The excision and ablation surgery acted like a temporary band aid – it will grow back in its own time, and I was told surgery will be needed every 1-2 years of my reproductive life. The surgeon informed me they left the endo growing in some places, including around my urethra and rectum, saying I would not be able to use the restroom normally if they had removed the endo there.
About a week after the surgery, I received my results. Due to a malfunction in the hospital’s newly implemented IT system, I was sent my results without my doctor’s approval or notice. I scanned my post-surgery report and googled the medical jargon, which led me to believe I had cancer. I repeatedly called my doctor for clarity, but the office said she was busy. Desperate and believing I had cancer after all, I begged them to get me in touch with her. For 30 scary minutes before she called me directly, I had a panic attack alone on my couch. She told me the mass they found was non cancerous, and apologized profusely for the IT mix up.
I was put on a medicine that the FDA only approves for 2 years of use; after that, my bones would break down significantly. I stopped taking it after a year due to significant knee and joint pain. I was put in a position to choose either my bone health or my endo health. The other option to keep my endo at bay was hormonal birth control; the pill made me severely depressed. I tried many different brands, each with the same toll on my mental health. Again I was put in a position to prioritize either my mental health, or potentially slow down my endo. I chose my mental health.
So much peace has come from the simple understanding that endometriosis is a dynamic disease. I can be laughing and enjoying the day pain free one minute, and doubled over in pain the next. Despite experiencing my symptoms for 14 years, each month I am crudely reminded how severely I am affected by endo – it is like my body gaslights me into thinking it's not really that bad…until it is.
The pain is sometimes at its worst while ovulating; the cramps come out of nowhere. It feels like a heavy bocce ball inside my ovary, pulling my body down. I feel pain flitter down my legs, then up and around my back. The week before my period starts, I feel the utter exhaustion, and crazy heat emanating through my body. I become an inside out furnace. To manage my flare ups, I use ice packs, heating pads, tens machines, and somedays cramp cream and castor oil.
Having endo has given me a greater empathy for humankind. We truly have no idea what someone is going through, and even if we are let into that pain a bit, words still fail to show the complete picture. I have no idea what each body is experiencing at any given moment. I stand strongly with each and every person experiencing endometriosis, adenomyosis, and all other sorts of chronic pain. Sending all my love to you all 💛 💛💛
