What I’ve been up to.
I think the month of September torpedoed my average step count for all of 2023, and I’m not feeling great about it. But I haven’t been feeling great about almost anything for much of the last two years, most of all physically. And as much as I want to judge myself–for being “lazy” or too susceptible to my own depression — I spent September finally making peace with the fact that, no, I just don’t move around very much anymore. Because for two-plus years, moving has felt different than it used to, back when I averaged 10,000 steps a day: It has been painful, scary, and unpredictably so, because I have been in scary and unpredictable pain almost every single day.
As I learned in September, after a four-hour exploratory surgery that took many years and false starts and doctor’s visits to book, I have endometriosis. What I chalked up to generic stomach problems, my scoliosis, poor mental health, and just general bad biological luck can now (largely) be attributed to something specific, even quantifiable — my favorite thing! The strong stabbing pains that I’ve felt in my pelvic region for years now are symptomatic of this chronic disease; so are the heavy periods that made my adult life middle school-level embarrassing. My extreme fatigue is part of that too, and the depression I already have was exacerbated by everything else.
Endometriosis is the result of tissue similar to the kind your uterus expels during your period accumulates around your uterus; the stuff that’s supposed to leave your body instead stays inside of it. There’s no clear-cut reason for why some people with uteruses develop the disease, and while it won’t kill you, it can cause excruciating discomfort if the tissue creates inflammation.
The disease is under-researched, under-diagnosed, and, perhaps worst of all, impossible to cure. The only way to find out if your pain is caused by endometriosis is by going under the knife, which is a big gamble that I am glad paid off for me. After several years of being told I simply had GI issues or “stress,” my doctor found and excised the tissue that had clustered around my uterus, causing me horrific pain. In two or three months, I’m told I’ll be able to enjoy “a lot of pain relief.”
That alone is a relief, as is the fact that my hospital bill is cheaper than I expected. I’m also grateful that I was able to take two paid weeks off to recover, even though my company’s sick leave policy is infuriating. (Text me about it.) Yet during those two weeks, and still now, I grappled with the after effects of surgery. I chugged painkillers until the heavy-duty one made me break out into garish hives. I couldn’t bend down to feed Maggie. For six weeks, I can’t lift anything heavier than Maggie, and walking remains an anxiety-inducing chore. When my waistband rubs against my many, many abdominal stitches, I still yelp in shock.
My doctor warned me about all of this, but the emotional pain is something I feel totally alone in. What if the first time I went to my primary care doctor about my strange, sudden ailments back in 2021, she recognized that they comported with endometriosis? What if the gynecologist I saw in 2016 didn’t shame me for the extreme pain I felt during a routine exam, and instead saw it as indicative of a greater problem? Maybe if we learned about endometriosis in high school health class, I would have been able to advocate for myself better during all those hospital visits I made as a 17-year-old because of some intense digestion problems. (The less I say about those, the better.)
If I had my endometriosis treated years ago, maybe I wouldn’t have spent the last two years in tear-stained isolation, canceling plans because I was either in too much pain or afraid that I might be stricken with pain upon leaving the house. Half the time, I was too exhausted to even respond to people’s requests to hang out; eventually, I stopped getting them.
I’ve always felt very lonely, even when I’m with other people. It’s why I like taking walks alone, wearing headphones, staying in bed for hours; it allows me to both indulge that loneliness while also protecting me from the self-judgment that comes from being around people and realizing I still feel totally by myself. But when those solo activities stopped being my choice and started being my default, my norm, to say my mental health nosedived–and, most regrettably, that step count!–would be an understatement.
Just like there is no permanent solution for endometriosis, I have no good answer for that “what if?” But I look forward to feeling better, being unchained from my couch, maybe even waking up and wanting to get out of bed. And “looking forward” is a pretty nice change of pace.
Other than all that, I’ve been reading a lot; I recommend these two memoirs, which work as something of a set. And I’ve watched almost all of The Leftovers in no time at all, a thing I’ve been meaning to do for years. I also have decided to learn how to embroider, because I am terrible with my hands and the antithesis of crafty; these are the things that make for a great embroideress. (Also, it’ll hopefully get me to stop being on my phone all day and do something more “productive,” even if it’s one of those short-lived, aborted hobbies.)
I also played Goodbye Volcano High all the way through one day; the game itself supremely disappointed me, but the soundtrack has been a fittingly melancholy-but-hopeful score for my healing period. This song is probably my favorite:
Hopefully you’ll hear from me again sooner than later,
Allegra
