One in 190 million: My Battle with Endometriosis
“Ms. Hayes, Ms. Hayes wake up. You need to wake up now,” said the surgical recovery nurse with some urgency in his voice. The breathing tube inserted during surgery had left my vocal cords strained and my throat sore, making it difficult to speak. I mustered all the strength I had and quietly muttered “pain, nausea,” before dozing off again after the nurse injected medicine into my IV.
When I finally came to again in the recovery area, I was unsure if three minutes or three hours had passed. It felt like there were mini weights hanging off my eyelashes, making it impossible to open my eyes. For some reason my eyes were weeping uncontrollably. The nurse told me I likely scraped them while puking after surgery. I mumbled under my breathe, “puking?” I had zero recollection of this and was fortunate that none landed on my gown, at least that I could smell since my eyes were still shut. I also wondered “How does one scrape their eyes puking?”
When I finally got dressed, my husband pushed me in a wheelchair through the same doors I had walked in 12 hours prior. The surgery had taken much longer than expected due to the extensive nature of my endometriosis. During the surgery, my doctor removed my fallopian tubes, cervix, uterus and excised endometriosis off my bladder, rectum, appendix, and throughout my pelvis. It made for an extremely long and difficult day for my husband and me. The week that followed proved equally as difficult.
For those unfamiliar, endometriosis is an inflammatory acute pain condition caused by uterine tissue growing outside of the uterus. This leads to inflammation and scar tissue forming in the pelvis, and in rare cases, growths can be found in areas beyond the pelvis such as the diaphragm, liver, lungs, brain and throughout the central nervous system.
There’s no cure or prevention for it, but it can be managed through surgery and other means. There are a number of other secondary treatments such as birth control that can also keep it at bay. Think of these secondary treatments as a flood wall on the Florida coast, mildly effective at best. But in my body, it was a category five hurricane all year long. Birth control did little to nothing to slow down my endometriosis, instead it made my moods so intolerable that even I didn’t want to hang out with me.
WHEN IT BEGAN
My collision course with endometriosis started around 20 years old, and increasingly got worse as the years passed. I dreaded my monthly cycle because for 3-4 days a month I was miserable and popping ibuprofen like tic tacs. On those days, I brought a heating pad to work just to have a moderately tolerable level of pain. It wasn’t just my pelvis that was in agony, but also my back, legs, toes – everything ached with such intensity. When I would work out, I could feel the scar tissue sticking to other areas in my pelvis, thus making certain movements uncomfortable. Endometriosis is truly a whole-body disease. It also causes chronic fatigue, and that was certainly the case for me.
Beyond my monthly cycle, I had ovarian cysts that would rupture every so often causing debilitating pain I can only describe as what I imagine labor feels like, but with no epidural.
It was after one such incident when I was 28 years old that I left work and drove myself to the hospital a few miles away where an ultrasound revealed a ruptured cyst and two unruptured cysts, one the size of a grapefruit. I had surgery to remove it a few short months later. After the surgery was over, my doctor told my mom that if I wanted kids, I needed to do it now. It’s worth noting that I was single at the time.
“Despite the fact that endometriosis affects 190 million worldwide and 6.5 million in the U.S., funding from bodies like the National Institutes of Health constituted only 0.038% of the 2022 health budget.”
As my doctor ineloquently implied, endometriosis causes infertility and mine was bad (Half of endometriosis patients suffer from fertility issues, according to a recent study). Kids weren’t really ever part of the plan. I was busy maintaining my health. Well, maintenance is really an understatement. Before my recent surgery a few weeks ago, I was like a 1992 Dodge Neon speeding down the freeway leaking oil with a 201,000 miles and clutch that was about to go out. I was active and busy, but barely hanging on. My husband is more gracious, and after reading this insisted I was more like a Bentley that just needed an oil change. But you get the point, I was in need of some major repairs.
It takes a lot to maintain my health. I joke that if one could become a medical provider simply by spending a significant amount of time interacting with them, I would surely have my M.D. by now. I have the complete Swiss army knife of medical practioners on speed dial – an acupuncturist, massage therapist, pelvic floor physical therapist, surgeon, dietitian, OBGYN, chiropractor, and a spine and pain doctor. Last but not least, a therapist (aka my sister and mom) for when it all just gets to be too much. All these people serve an important role in enabling me to manage this incredibly complex condition.
It took a long time to find good health care providers who empathized and believed my pain. I would do all sorts of verbal gymnastics to try and convince them. For several years, I worked in health care communications, making me relatively familiar with the vernacular of those who wear the white coats. I would try to speak their language in attempt to prove I was knowledgeable about my own body and health. I knew enough to ask questions and debate a doctor and tell them when I thought they were wrong, much to their annoyance. I still maintain, the great providers listen and accept the offer of knowledge, the bad ones try to discredit your experience.
For the uninformed providers, I can hardly blame them. Endometriosis, like so many other women’s health issues, is incredibly under researched and underfunded. Despite the fact that endometriosis affects 190 million worldwide and 6.5 million in the U.S., funding from bodies like the National Institutes of Health constituted only 0.038% of the 2022 health budget, according to a recent study published on the National Institutes of Health website. “As a comparison, 12% of U.S. women are expected to suffer from diabetes in their lifetime. If it is assumed that half of the allocated diabetes research budget was for female sufferers, there is a funding allocation of $31.30 per woman, over 1,500% more than for endometriosis,” according to the study.
What’s more infuriating is that diagnosis is often delayed because surgery is required to confirm the diagnosis, as was the case with me. I suffered with the condition for years before receiving a diagnosis at 28 years old.
The winding road to a diagnosis is often fraught with misdiagnosis. “In a 2012 study of 173 endometriosis patients in Austria and Germany, 74.3% had experienced a misdiagnosis. These misdiagnoses included intolerances, appendicitis, irritable bowel syndrome, and pelvic inflammatory disease,” according to the study.
WHAT’S NEXT
During my recent post-op, my surgeon emphasized the severity of the disease and how it had “encompassed my pelvis.” Most people would be a bit horrified after learning such news. For me, it was relief and validation. Validation that there’s finally a plausible explanation for all the debilitating and unusual symptoms I’ve been experiencing over the past 22 years.
After surgery, I now have a relatively clean slate – or as close as it gets when having endometriosis. I’ve always been incredibly health focused, but even more so now. I’m now lasered focused on anti-inflammatory foods, exercise, meditation, and recovering from my surgery. In six months, I’ll start a low dose of hormonal therapy to prevent a major reoccurrence.
Endometriosis is a formidable opponent, but so am I. The fight continues.