Endometriosis Destroyed My Sexuality — Owning My Queer Identity Brought it Back

I’m wrapped in a towel, my hair is wet, and the afternoon sun streams in through the balcony of a beautiful AirBnB in the heart of Prague. He’s trying gently to seduce me into some sexy time because we’re in fucking Prague and the intimacy is lacking. He’s so hopeful that this will finally be ‘the thing’ that brings sexy back into our relationship but I stiffen before he even touches my skin.

Perched on the white bedding on the white wrought-iron bed frame in the late-August afternoon sun, I start to cry. Because how do I explain to him that the person he fell in love with, who he wants so desperately to come back, is gone?

How do I explain that I’m so disconnected from my body that I don’t know how to let myself back in, let alone him? That pain has become my identity and I’ve lost myself in it. That the thought of his beautiful but too-big cock tearing into the tender, painful flesh of my vagina makes me want to scream and recoil before he even puts his hands on me. That when he comes up behind me to kiss my neck my entire body freezes in anticipation of the hetero relationship expectations I’m already failing.

That I hate myself oh, so much more than he ever could.

~

This inner monologue dominated my thoughts for years.

I have endometriosis (endo), a debilitating chronic illness that affects an estimated 200 million people worldwide, although numbers are likely higher as research focuses exclusively on cisgender women. Endo occurs when tissue similar to the lining of the uterus grows elsewhere in the body. This tissue has been found in every single part of the body, making it so much more than just a bad period! I have lesions on my ribcage that can cause stabbing chest, neck and shoulder pain. Symptoms like chronic, severe pelvic pain, gut issues, fatigue, infertility and painful sex are common, and people suffer for years without answers.

According to EndoAct Canada, Canadians wait five years on average for a diagnosis, though many people wait much longer. I started having symptoms with my first period at 12 and wasn’t diagnosed until I was 24, via surgery that I forced my way into. Excision surgery — surgery that removes endo lesions from the root rather than ablation, which burns them off — is currently the “gold standard” of endometriosis treatment, but managing symptoms can be a full-time job.

I talk a lot about how endo has impacted my life, but sexuality is probably the hardest thing to navigate.

I love sex. Like, love. sex.

All through my teens and early twenties I was “the vulgar one” who always joked about sex or wanted to talk about it or learn about it or watch it or - once I’d tried it - do it over and over and over again. It was such a part of my identity that at one point I was determined to become a sex therapist (it’s not off the table). I would always joke when I jumped from boyfriend to boyfriend that I was too slutty when I was single, so I had to couple up to settle down. Society does not take kindly to a woman who owns her sexuality.

The first time I had sex with a boy, I remember being shocked that it didn’t feel like running into a moving tractor pussy-first, as a friend had aptly described to me in ninth grade. Sure there was discomfort, but I figured that would go away with time.

It didn’t.

I learned to deal with it over the years and keep my mouth shut. Sometimes it was okay, sometimes it wasn’t. I don’t remember having any real conversations with partners about it, because I was never taught how to communicate my sexual wants or desires. As long as I was making them happy, that’s what mattered. And sometimes it wasn’t even an issue (bigger is not always better, folks). I made myself and my pain small because no one really knew what to do with it— especially me. I once went more than a year without masturbating, without feeling my own warmth or giving my pelvis the experience of gentle touch without pain. 

When sex becomes associated with excruciating pain, it fucks with your whole sense of self.

This power that was once a way for you to feel utterly connected to yourself and others is now gone, in its place are fear and a facade that will lead you through the motions because that’s what’s expected. You start to believe that the person you were before, the person who could be touched without tensing up, who could experience pleasure purely for pleasure’s sake, is gone forever.

I watched my ex mourn the person he fell in love with when she was ripped from her body by pain and an overbearing aura of detachment. I mourned my former self and spent months, years convincing myself that I would be able to live this way forever, and then I tried to make forever come sooner because I just couldn’t.

So I went through the motions of sex, and got very - like, very - good with my mouth and hands because it was the only way to avoid an argument. It became less about pleasure and more transactional in nature: as long as I fulfilled my end of The Heterosexual Relationship Rules, everyone was happy.

Except no one was.

I’ve always known I was bisexual, but it managed to stay a fantasy I explored within relationships or as a kink, never really on my own terms. As pleasurable penis-in-vagina sex seemed less and less likely, my mind wandered in a more sapphic direction.

And I liked it.

A warmth started to build somewhere deep in my pelvis. Not pain; a pleasurable tingle that reminded me, we’re still here.

The more I sat with that feeling, the more I wondered if this was the solution I’d been missing out on in all my years of complete ignorance. As I slowly made more queer connections around me, I started living my most Dorothy-waking-up-in-Oz realness. My body hummed with its proximity to a life that until then had only lived in my (very vivid) imagination.

Now, for the first time in my adult life, I’m single. My sexuality is my own. I don’t owe it to anyone, I don’t have to sacrifice it, I don’t have to make it small.

And - pain or no pain - that is fucking power.

To learn more about endometriosis, visit The Endometriosis Network Canada and check out their Endometriosis Awareness Month lineup.