In case you read my blog and are not aware, I have endometriosis. (Yeah, that’s what that MenstroMonster tag is doing in the sidebar.) In case you are also not aware, March is Endometriosis Awareness Month. In light of that, I’m doing this whole Blogging for Endometriosis Awareness** thing. The instructions are thus:
Each week there is a different topic that discusses the various ways endometriosis impacts our lives. We all know that the physical aspects of the disease is just on facet of life and it impacts our lives emotionally, socially, and spiritually.
The prompt for the week of March 4 is:
Physical impact that endometriosis has had on your life
And, well, yeah. Endo has done what a culture of misogyny, beauty myths, and fat shaming could not. I hate my hips. Which is not even actually one hundred percent true. It’s more like endo has caused unrelenting — but changing and sometimes unpredictable — pain and mobility issues in my hips.
It is nice when I don’t need to be plugged into the wall.
Endo makes it feel like my hips have betrayed me.
Some people have endo that blocks their fallopian tubes and clings to their ovaries. Some have endo that lines their bladders and bowels. Me, I have endo that’s crept into the muscles, connective tissue, and nerves of my hip and pelvic region. To get slightly grotesque about it, endo is eating my hips.
When I talk about endo to people, I find there are a lot of folk who want to categorize it as a condition that consists primarily of “period pain.”
I mean, there are the people — including far too many health care professionals — who want to dismiss it as “just” cramps. To each and every one of them I wish a well-seasoned outhouse, copious amounts of urgent diarrhea, and exactly two squares of TP. One-ply.
There are also somewhat more informed people who understand that endo pain is typically more severe than are standard issue cramps — but who still generally think of it as uterus-centered period pain, only more intense. They don’t account for the potential realities of people with endo to extend beyond periods, beyond pelvises, beyond pain.
I don’t hate my hips because they cause me pain, though I don’t exactly love them for it, either. At this point, pain is familiar, predictable. Not that I don’t cuss out my “sawed in half” feeling from time to time, but I’ve had a lot of years to fine tune a lot of coping mechanisms.
But my hips — home of my “powerhouse” muscles, as so many fitness articles like to remind me — are becoming unstable. I get stiffness and range of motion issues that are roughly cyclical — worse when I’m closer to bleeding, better when I’m further away from it — but that still change wildly from day to day. This means that my baseline for how to perform simple physical movements — standing up, sitting down, walking — isn’t something I can take for granted. More complicated movements — running, negotiating tighter quarters (like a classroom with three dozen desks), practicing pretty much any yoga — require additional amounts of concentration and physical negotiation. In addition to endo in my muscular and connective tissue, the endo along my nerves means that my memory of how to perform these actions may need adjusting not just from day to day but from moment to moment.
The upshot is that I thwap into things with my butt a lot and sometimes stumble for no visible reason because I have trouble determining where my hips are in space. Which, in addition to the bruising, leaves me worrying that people are judging my fat ass.
And also leaves me with questions.
Is this my new normal? Will it get worse? Is there a way to predict how I will feel when? What are my new ways to cope? Why does no one talk about this when talking about endo?
Where are the people who can help?
I guess maybe I don’t hate my hips. I hate that my hips bring up so many unanswered — and maybe unanswerable — questions.
** I want to acknowledge that the author of that post uses some gendered language to describe people with endometriosis. While endo does disproportionately affect women, it’s important to recognize that not every person who has endometriosis — for example, some trans* men or some folks who are genderqueer — is or IDs as a woman.