Describing endometriosis

I have six chronic pain conditions: chronic migraines, arthritis, neuropathy, IBS, chronic back problems, and endometriosis. Daily experiences of pain shape my life in more ways than I could even identify. I am also disabled in other ways. I have complex PTSD. I am autistic. I am chemically sensitive. I have diabetes. I have a mobility disability as a result of getting hit by a car.

When I was first developing my current WIP Shocking Violet, I knew that I wanted to write characters who, like me, are disabled in more than one way. I wanted to show them creating relationships with each other, building access intimacy, managing flares and overwhelm. All of my main characters have PTSD. Three of my main characters are also autistic and have other disabilities: Jax is diabetic, chemically sensitive, gets chronic migraines, and has chronic back problems. Liliana has fibromyalgia and uses a cane. Violet has endometriosis.

I wanted to write a character with endometriosis because I have never read a story about a character with it, and I think it would have helped me to see that experience in fiction. Particularly because it took me so long to get diagnosed. It took me about ten years to even talk to a doctor about symptoms, because I had no idea that what I was experiencing was unusual, until the pain and bleeding started getting dramatically worse. It took ten years after I went to that first doctor about it, for me to get diagnosed. Among other things, endometriosis fundamentally shaped my sex life, from day one.

Folks like me, fat queer trans survivors with endometriosis, often avoid and rush through medical care, especially GYN care, because it not only physically hurts but is also often deeply biased and we get treated badly. Sometimes all we have is stories and word of mouth to help us figure out what is going on.

I wanted to write about a character who has endo, and to use that word on the page, to describe what that kind of chronic pain feels like, to show Violet flaring and managing and having an active sex life that is shaped by her experience with endometriosis. Not just to leave clues for readers like bread crumbs, that I wish I had back when I just accepted this as a thing that was happening and had no idea it was endo. I also wanted to write myself onto the page, create a mirror for folks like me who were grappling with this particular kind of chronic pain. Each of my chronic pain conditions feels different, has a specificity to it. Not all pain feels the same (as I have discussed with regard to writing kink).

It has been intense to write about endo flares, to deeply touch the experience and to write about the ways they can interact with PTSD. Feels very close to home. (Though not as close to home as writing a trans character with endo would be…some day I may be ready to write about endo and dysphoria interacting, but not yet.) I wanted to share an excerpt with you, when Violet is experiencing an endo flare, in conjunction with being badly triggered and managing PTSD symptoms.

(As a heads up, this excerpt includes a detailed description of pain and bleeding associated with endometriosis, in the context of being triggered. It includes a brief description of self loathing and internalized ableism. It references trauma symptoms but does not describe traumatic experiences.)

Violet couldn’t pull herself together. She felt like she had become porous, letting too much in, and way too much out. She would just start shaking, or rocking, or find herself crying silently. The smallest things would feel like daggers. She knew that she was blurting way too much stuff without thinking. That she was all messed up in the head. And she didn’t know how to stop it. Didn’t know what to do. It had been going on for days and she just felt so much, too much, all the fucking time. Like she’d had this stone shell and it had been cracked open. Like she was leaking, and vulnerable. Like maybe she was broken inside.

When the pain came that evening, it felt like it was personal. Cruel. Even though it happened every seven weeks, give or take. Sort of. There was so much blood. It was a horror show.

It made her so damn tired, losing all that blood, surviving so much pain. She felt so fucking wrecked by it right now. If she had the energy she’d be angry at it for making it so she couldn’t even keep busy, but had to have all the feelings along with all the pain.

The pain ate the world, huge and hungry and dripping poison everywhere. And there was nothing to do but lie there and let it take over. It was so intense she couldn’t even read, couldn’t focus on a screen, nothing. Sometimes, for a brief period, she could float away from her body, but the pain always brought her back.

She lay there for days, missing way too much work. Trying to find the least painful position possible. Trying not to move at all because movement often made it worse. An audio book on the background in a useless attempt to try to distract herself from the flashbacks that just kept coming, and the despair that wanted to seep into every pore she had open. It felt utterly unending.

The excerpt below describes pain from the depths of it, when it takes over everything. I have also posted an excerpt that describes Violet doing pain management through sex. Everyone’s experience of endometriosis is different, so please don’t assume either of these excerpts would be accurate for everyone. 

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2 thoughts on “Describing endometriosis

  1. I don’t have endo, but chronic pain for other reasons and I relate to this, especially the part about when it feels like it’s personal. For me, both chronic pain and PTSD remind me of my own vulnerability and I think this excerpt catches that experience really well. Thank you for this.

    Liked by 1 person

  2. DAMN. This feels a little like my letter to my insurance for my uterus removal surgery approval for my endometriosis.

    Relevant parts:

    “I have had to be on birth control since I was 18. Not because I was sexually active. But because my menstrual cycle was so sporadic and heavy and painful that I wasn’t able to do much. I didn’t notice it much while I was in school due to all the stresses and activities that I was under and participated in. I did a lot of backpacking and hiking and rockclimbing with my Girl Scout troop from Elementary School all the way up until graduation from High School. Once I graduated and got a job and started having less time for being as active as I was accustomed to thanks to Community College and long commutes for work that was when my menstrual cycle came into play as irregular, heavy, and severely painful. Like someone trying to claw their way out of my body with a dull toothpick. It would last anywhere from 4 to 14 days. And even when I was physically active with hiking, I would have months where I would skip menstruating or I would spot heavily the entire month or I would heavily bleed 4 to 14 days in a row. Sometimes I’d bleed 4 to 14 days throughout the month randomly. It wouldn’t be every 28 days either. Sometimes it would be 2 weeks in between menstrual cycles. Sometimes it would be 2 months in between cycles.

    I originally started on Ortho Tri-cyclen. I was on that for 2 years. Then I went onto Ortho Evra for 6 months but between the lawsuits and everything I was hearing around that time in addition to my own sensory issues made me stop using it. I went back to using Ortho Tri-cyclen and was on that for another 6 years. About that time it started making me feel weird and was exacerbating my BPD and anxiety (that I didn’t know I had at the time). I used Nuvaring for another 6 months. And between body dysphoria and the feeling weird from the undiagnosed BPD/anxiety I had to stop using it. For the past 4 years, I’ve been using the Depo Provera shot. It’s getting to the point that the pain is starting to come back to where it was when I was off of my meds and unable to move much. Due to my own body dysphoria from trauma inflicted upon me by a previous partner via sexual assault and rape, IUDs are a no go for me. Just the thought of considering them makes me uncomfortable.

    In addition to the intense menstrual cramping pain, which the birth control medication dulls but doesn’t completely take away and the heavy spotting (which is infinitely preferable to the seeming blood elevator scene from The Shining, Kubrick movie loosely based on book from Stephen King, that I’d get just from sitting/lying down and breathing), my body is also exhibiting signs of early menopause. I’m getting intense hot flashes usually at night. My bedroom is very cold at night and I find myself often winding sleeping either on the couch in my bedroom or on the floor and changing my clothes more than once through the night. My issues sleeping are getting worse even with being on medications for helping me sleep.”

    The rest is just fluff and talking early menopause and other shit that isn’t relevant to endo but…..damn. *Fist bumps*

    My non binary ass can’t wait until I can get the asshole uterus out so it stops trying to kill me.

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