THE BLOG
08/25/2014 01:59 pm ET Updated Oct 25, 2014

This Is What Endometriosis Feels Like

Artem_Furman via Getty Images

The pain is deep and heavy, almost as though I'm being pulled down by gravity. It's a soreness, sometimes a pinch or a twinge or even a stab -- but nearly always it is just deep and full, almost like a moan that stays always in a low octave. There are times, at night as I find I can't move because it has pulled me down against my bed, where I find that I, too, must audibly groan. Almost as though I'm harmonizing with the depth of the painful chord inside.

When it is tired and much heavier than usual, it will fall against my lower back. It sits there and pushes against my spine. I try not to tense, which only makes it worse, but even to try to relax, to breathe, seems to do little. The pain is not something I can guard against nor can I breathe into it -- to breathe into it would be no less irritating than to fill a balloon to near bursting -- and at times, that's exactly how it feels. Sometimes I realize I am holding my breath and when I let it go, my legs shake and I feel a swell of pain that ripples through me as though a vibration from a hard-hit chord.

Pain may shoot down my legs. Pain may rise up and interrupt whatever I've tried to feed myself. The pain buzzes at my pelvic floor whenever I go to the bathroom. When, penetrated with the promise of pleasure, there is a deep and sudden ache that spreads in rhythmic time between my hip bones. I grit my teeth and reach for pleasure but it doesn't come, I don't come, and after I bleed.

Sometimes I may bleed for a few days and instead of post-coital tingling, there is a sizzling pain and exhaustion that brings tears to my eyes.

I take a lot of hot baths, even when it's 80 degrees in my apartment. I sweat, but I need the penetrating heat just so I can catch my breath. Sometimes I take three baths in a single afternoon. Other times, I'm glued to my heating pad, or those patches you can wear. I wish those were covered by insurance because they are $7.00 per box and I go through at least three boxes per week during a bad flare.

When I run, there are twinges. Sometimes when the rush of endorphins washes through my body, I may get a moment's peace, but when my feet have slowed and my breathing heightens, the pain gives way to nausea, and full-body spinning. My body is begging me to be still.

Yet, to be still is nearly impossible. The pain is twisting and wringing, and no matter what I do there are times when I can't get comfortable. I lie flat, then I lie on one side with my knees to my chest. Then I curl into a tiny ball. Then I'm splayed out, half my body draped over the side of the bed, my head touching the floor. Then I'm squatting, my chest against my bed, grasping the sheets tightly. There are times when I feel as though I want to stretch my body out until my limbs lose all their elasticity. Other times, my body seizes up and tries to be small, curling into a fetal fibonacci.

People tell me just relax. Doctors say it. Well meaning friends. Anyone who has even bore witness to the pain implores me to relax. I no longer have control over this situation, you must understand. I can breath in and around and within the pain -- but that's the thing, I am in pain. I am living inside of it. That's what I'm saying, really, when I say "I am in pain" -- because to feel a pain so raw and deep and penetrating is to leave this reality entirely and exist on a separate plane as it each pulse moves through you, as though your internal organs are being bruised and beaten.

What about sex? What about it, yes, well, it is something to be endured that's for certain. Even self-sex, so many have suggested, what about masturbation? Having a non-penetrative orgasm? Orgasms feel good! They send endorphins throughout your body. You should just have orgasms.

Ah yes, but see, that's the other injustice. While the twisted internal anatomy has prevented me from enjoying accepting a willing and joyous penis into the vault of my womb, I am similarly unable to even experience an orgasm as the lone wolf that I currently am. This is because the shuddering, tighten-and-release mechanism of an orgasm sends my uterus -- and, I allege, whatever it is adhered to currently with fibrous, damaged tissue -- into a tight, grating spasm not unlike a "Charlie Horse."

Is the brief and emancipating pleasure of a fifteen second orgasm worse the hour of such a reproductive wrenching? Not to me, no.

I know that people are only trying to help, to offer me a solution. But I know that right now, in current medicine, there isn't one. I am learning to accept that. So, when I share my pain with you, when I invite you into it, do not try to pull me out because you will only drag yourself down to where I am. Instead, just stay where you are. Reach your hand down not to pull me out, but to simply applaud my valiant efforts not to squeeze your hand until it falls off from lack of sufficient circulation.

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