I Hate My Hips

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.

Microwave heating pad tied at lower back.

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.

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13 comments on “I Hate My Hips
  1. Jamee says:

    I have so many issues with hip pain! My tailbone and hips are most definitely impacted by my endometriosis. Typically if I have tailbone pain, I know without a doubt that endo has returned. It is so frustrating and a pain that most people do not recognized. Your hips and core are the center of your entire body and when you have pain, it affects everything! Thank you for sharing!

  2. kaberett says:

    <3

    I’m getting increasing motion-related hip pain. Not enjoying it even a bit. :-/ Thank you for talking about this, & reassuring me that I’m not making it up – it’s been really, really helpful & reassuring to me.

    • Tori says:

      I’m not even sure my pain is increasing. It’s just, my hips… they poop out on me when I’m not looking now.

      But no, you’re not making it up.

  3. Alison says:

    I would suggest informing people who are confused about endo that it is a tumerogenic disease, like cancer, but that the tumors are considered benign, unlike cancer, even though the tumors destroy anything the attach to, like cancer. I think the disease needs to be reclassed to be treated properly. I think endo tumors are much closer to cancer than to benign tumors. I think that because the tumors tend to recur in the same locations, including invading scar tissue where previous tumors have been removed that it needs to be treated with radiation and/or chemo-therapy. I think that ridding the body of endometriosis would have the same effect as ridding the body of cancer – catharsis.

  4. Hrovitnir says:

    Holy shit! I didn’t actually *know* endo could be in connective tissue and suchlike. I knew it could hurt extensively but I thought it was all uterine and could refer around the pelvis… not that it could be IN your hips. 8(

    Endo is evil!

    • Tori says:

      As far as I’m aware, it is much more common for endometriosis to remain on the outside of the uterus, in the vaginal cul-de-sac, along the outsides of the bladder and bowel, and along the lining of the pelvic cavity (the sort of “filmy” tissue there, not muscular tissue). Then again, I’m also not sure how many laparoscopies routinely check areas beyond that for possible endometriotic lesions.

  5. Thanks so much for sharing your story. I am scheduled for a hysterectomy in a week. It mostly was inspired by almost-crippling hip and back pain. Each morning I roll out of bed onto the floor, then slowly do my best to get upright from there. I have spent days fruitlessly searching the internet for information on endo and back pain; in my pre-surgery anxiety I was convinced I was simply the victim of a bad mattress. The head games that endo plays. Your post calmed my heart in so many ways. I can’t thank you enough. You described exactly the pain I have in my back. And I now know I am not alone.

  6. cheryl says:

    thanks for sharing your story.

    and thanks for the reminder at the end. it must be so tough to not only be caught in the wrong body, but to then have that body (and the specific parts that feel like a betrayal to your spirit) cause intense pain. i read once about a clinic, or maybe it was just a certain time at a standard practice, that specifically focused on people who identify male but need GYN-related care. which is beyond awesome since it must be incredibly hard to not only have to deal with the health issues but also explain to an attendant that you are there for care if you are living as a male but not physically transitioning for whatever reason (and to face the stares when you are called back…or the assumption you are there with a pregnant partner…and so many more complexities…). i’d always considered myself open-minded and considerate of gender-identity issues, but it was an issue i never considered prior to that story.

    sorry to get so rambly….i mostly just wanted to say i appreciate the reminder…i’ve always said that endo impacts only women, and ranted about the ignorance on women’s health in general….but i should keep in mind it only impacts female-bodies and can hit people who identify otherwise

  7. Megan says:

    Oh dear friend, you are a special person to share in depth your experience with Endometreosis… and I am worried the disabling hip pain that has kept me sitting all weekend and feels like bricks weighing my hips down could be signs of this.

    My pain specialist suggested I get tested for this recently, but I’m only 23 and to be honest I didn’t know what it was when he asked me if I had been tested for it. Convinced that my hip pain is unrelated to my Fibro pain, I’m fearful of this diagnosis.

    I have Fibromyalgia and I’ve a bad habit of referring the intense and rather different hip pain to my Fibro symptoms. Thank you for reading this and if you have the chance to comment back maybe you have tips for me to handle the emotions upon diagnosis…

    Sticking Together,

    Megan

  8. Yoga girl says:

    You write about endo in a way that is so descriptive as to truly convey the experience to others. Thank you.

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