We have a family tradition. Cold Face is what my father calls it, but the textbook word is stoicism: "the endurance of pain or hardship without the display of feelings and without complaint" (Google). Menstrual periods have hurt my entire life. I passed out in high-school Trigonometry once. A foreign exchange student asked if I was okay when I woke up. Apparently, passing out in Trig is normal to Americans, and I assumed extremely painful periods were normal too. Until about two years ago. Suddenly the pain was all of the time, every day. I went to the OB/ GYN, who fortunately believed me because I have a strong family history of endometriosis. Endometriosis occurs when endometrial-like tissue (similar to the tissue that lines the uterus) is found growing outside the uterus, typically in the pelvic cavity and around the outside of the uterus and ovaries but sometimes around bowels, bladder, kidneys, etc. Unfortunately, my MRI showed nothing. Being the stoic that I am, I assumed that meant I was probably just being a baby about some musculoskeletal pain or something (I did catch fast-pitch softball for over a decade and I have jumped out of a helicopter into the ocean without a parachute...so body pain complaints should be expected?).
The doctors wanted me to describe my pain on the classic ten-point pain scale (the one with frowny faces). I have never understood the 10-point pain scale. It has no real descriptive anchors. How the hell am I supposed to know if this sword stabbing in and out of my belly for 6 months is a 10? Was it the worst pain in my life? I don't know. Periods were normally a 10 as far as I knew. I've broken my nose twice, but I slept both through the following nights both times. I rarely managed to sleep through the night without medicine once a month anyway thanks to periods for like 30 years. I didn't sleep entire nights for months with this new level of pain, it hurt too much, even though I was utterly exhausted. Still, maybe a 10 is being mauled alive by a bear? This wasn't that bad...but then again, maybe I'm too stoic and introverted to be a reliable witness to my own pain?
I got lucky though, and the surgeon signed me up for a laparoscopic hysterectomy despite my poor ability to articulate my pain levels. Stage IV (out of IV) endometriosis everywhere. One thing you never want to hear your surgeon say? "I had to dissect your rectum...and your bladder."
The surgery was more traumatic than expected and with that much tissue removal, it was probably inevitable that I developed a post-surgical abscess and infection. Fortunately, I live with an ICU physician, so I did not tough that one out until I became septic...still it tried to kill me. I required five days of IV antibiotics and another surgery to drain the abscess. More risk to my life, more time away from being able to do anything but wait in a hospital bed in pain. Don't ask, I don't know if it was a 10 on the pain scale, but it was definitely a 100 on the pain-in-the-ass scale. I couldn't do anything to help anyone, even myself.
What's my point? (And I do have one...) One in ten women suffers in silence for 7 to 10 years before being diagnosed and treated (https://www.usnews.com/news/health-news/articles/2021-03-18/stop-gaslighting-women-about-endometriosis). I was one of them. While endometriosis itself isn't typically fatal, deeply infiltrating endometriosis leads to serious dysfunction of the organs of the pelvis (bladder, colon, rectum, etc.) as well as obliteration of normal anatomical spaces that can cause "frozen pelvis" (imagine being paralyzed in the hips). The complications (e.g. sepsis) can cause death, and even if they don't, who wants to live bed-ridden with a feeding tube and a drain tube for the rest of their life? I think there are probably many more women toughing it out. Maybe to the brink of disaster. Mothers, executives, public servants, healthcare professionals, etc. all of who have bigger reasons to take care of others first and foremost while they tough it out until it becomes brutally obvious. This is a plea to them, and maybe others who are too stoic for their own good. Don't be too tough, too resilient. You can't help anyone if you don't take good enough care of yourself first. Even if you're not a woman, you probably know a woman who is one of the every ten with this silent disease. I think we can do more to help each other articulate our pain, and listen to each other articulate that pain so that it can be diagnosed and treated. Some pain takes years to describe right. Some diseases take ten or even twenty years to name.
