Searching For Pleasure In The Pain

Sex, Drugs & Endometriosis - Continued

The following chapter contains descriptions that may not be suitable for younger readers, including discussions of sexual content and medical trauma. Reader discretion is advised.

The pain that wakes me in the middle of the night is white-hot.

Bright light obscures my vision, pain explodes from my uterus, guttural moans like a dying animal escape from my throat, tears drop like waterfalls down my face.

My upper and lower halves are twisted in opposite directions and I’m ready to split in half like the Titanic, muscle fibres tearing like the ship’s innards, and sink into an ocean of blackness.

In these moments, in the dark, alone, sometimes I’m not sure I’m gonna make it. That the pain will consume me, chew me up, spit me out and leave me for dead, finally with some relief.

But it doesn’t.

It makes me beg with every cell in my body to stop everything, no matter what it takes.

My phone is filled with audio and video recordings of me telling myself this is real, I’m not dreaming, I’m not dying, this is real.

In these moments, in the dark, alone, I forget that I’ve done this before and will do it again; but I let the moment take me away and dream of making it all stop. Just for a moment.

But it doesn’t.

Instead, I breathe and sob and stretch and move and vomit and shit and sob and smoke weed and count the milliseconds until it’s over. Until sleep stops eluding me and I can rest.

Because in the morning I’ll wake up and it will all feel like a dream, making me question my own sanity because no one was there to see it except my cat.

In the morning I’ll remember what pleasure is because in the dark, in the middle of the night when no one else was around, I was sure I’d never feel it again.

But I can.

This is what I’m thinking about as I sit, naked from navel to ankles, in another exam room in another hospital waiting for another specialist to do another transvaginal ultrasound. Although this isn’t just any transvaginal - it’s the advanced ultrasound that this doctor is pioneering for the endometriosis community that everyone is waiting to have.

The fellow that performs the initial ultrasound appreciates my sense of humour as he penetrates me with the phallic camera. It’s in me for close to an hour - this is a very thorough ultrasound. When the attending physician comes in, he needs to do some looking around as well, except he realizes that this is the ‘faulty’ wand that can produce blurry images so they have to switch it out and enter me all over again.

It’s a blur, but there is definitely endometriosis inside my pelvic cavity. Close to 30 cysts embellish my ovaries (but I’m extremely fertile? Thank you, cruel universe), and a new one: signs of adenomyosis in the myometrium, one of the muscular layers of the uterus.

Adenomyosis differs from endo because it causes the uterine lining (endometrium) to grow into the muscle walls of the uterus, causing extremely painful periods, heavy bleeding, infertility and other delightful symptoms. It’s pathologically is different from endo (which is not the endometrium!), and can be cured by a hysterectomy, which endo cannot.

And so I’m revisiting The Pill for the first time in five years, and have been consented for a hysterectomy. Because we can’t possibly consent ourselves by asking for one, we must have the approval of a physician to remove our baby-maker. Taking the meds continuously is supposed to prevent me from menstruating, which should stop the white-hot pain episodes I now know are caused by adenomyosis. And I have about a year to decide if a hysterectomy is the route I want to take to remove adenomyosis and stop my soul-destroying periods. No pressure.

I struggled with the decision to go back on The Pill. A lot. The mental health side effects were incredibly distressing, as were the migraines.

As I write this I’m eight days in, and the side effects are real. I’ve already had my first migraine. Three out of eight days, I’ve believed oh-so-strongly that the world would be better off without me in it. I think about how I would do it, and how much work would be involved in the preparation and I can’t even bother with that. As is my custom, I’m sharing my experience with The Pill on social media because that is how we find common ground in the days of pandemics and online support, and people tell me that the mood swings passed after the first stretch, so I’m hopeful.

The final thing that made me feel okay about going back on it was the fact that my mental health is incredibly well-managed by an antidepressant, an antipsychotic, weekly group therapy and biweekly one-on-one therapy. I’m doing the fucking hard work on myself and focusing on my health and it’s starting to pay off.

In therapy, we focus on dialectics, or the practice of holding space for multiple opposing truths at the same time.

And that’s how I move forward:

Searching for pleasure in the pain, holding space for these opposing ideas at the same time, because can one truly exist without the other?

At the intersection of pleasure and pain is freedom.

One of my greatest pleasures

amidst the pain is exploring polyamory and ethical non-monogamy, and what that means to me. And the people in my life. I’m exploring platonic intimacy, sex friendships, dating couples, dating my friends.

I spent so much of my heterosexual life feeling like a failure for not being able to “perform,” or live up to relationship sexpectations because of my pelvic pain and intimacy issues. Two years ago I’d all but resigned myself to a monogamous life sans libido, because that’s what my relationship had become.

Now I’m getting ready to attend my first fetish party with friends I met online. (By the time this goes live it will be over). I filmed myself masturbating and shared it on MakeLoveNotPorn and it’s the most liberating, affirming thing I’ve ever done (sorry, Mum and Dad). I have multiple sex friendships with multiple genders (and multiple vaxxes) and it’s blown my mind wide open as to what sex and sexuality can look like beyond penis-in-vagina penetration (although I’m still very much bisexual and haven’t given up the D entirely. I am a Blow Job Slut after all).

I had my first strap-on sex as a top, or as I like to call it, The Thruster.

It was something else entirely, and I’m not just talking about the hella workout.

Dick energy is real, no matter the size. The feeling of penetrating someone is one of the most powerful, intimate things I’ve ever felt.

I was fisted and it was like they expanded my mind through my pussy. If you’d have told me this time last year that I’d be saying that, me and my pelvic pain would’ve laughed you out of town. Turns out a little communication and a lack of expectation go a long way. And small hands. Small hands help.

I invested in a set of butt plugs, a phrase I never thought I’d say as someone with chronic hemorrhoids and general butt issues. But guess what? When you remove shame and shitty humans and add a fuck ton of lube and trust, pleasure drips down your legs like the sweetest honey and you finally remember how it tastes.

I want more. Of all of it. I’m so sad for past me that my definition of sex was so limited for so long. And like, I consider myself a kinda kinky person.

Dating a couple is cool. I love being around couples, period. It always feels so comforting and I love watching them interact; the small ways they show love for each other, poke fun at each other, encourage each other. It’s interesting to try and figure out where you fit - this is an entirely new dynamic for me. But it’s exciting. It’s exhilarating to discover common ground and find little crevices through which to fit myself into their existing cuddle puddle of intimacy.

I no longer reserve romance for romantic partners. Who says making dinner with pals every Friday isn’t a romantic tradition? The absence of sexual intimacy doesn’t mean there can’t still be deep love and care. I have a lot of love to give, and I want the people who are always there to receive that love.

Don’t get me wrong - nonmonogamy, polyamory, however you choose to practice it, is fucking hard. There’s a reason so many people stick to one partner. But the people you meet and the experiences you have are so worth all of the hard. For me, anyway. Yes, it opens you up to potential for pain, but there is so much potential for pleasure. When pain already permeates your existence, it becomes easier to open yourself up to the possibility of more when pleasure potential is so abundant.

The thing I’ve learned about living with chronic pain, is that you never know when the good moments are coming. At the risk of going all Dead Poets’ Society on y’all — you’ve gotta Carpe fucking Diem. Seize the pleasure when it comes and let it wash over you, dulling the pain or disappearing it altogether, no matter how fleeting.

When I originally shared this story on Love & Literature, I didn’t know what to expect. But I certainly didn’t think I’d have my own Substack publication by the same name, or be writing the memoir of the same name (you know you wanna publish this), or be embracing my queer power as voraciously as I am. I never expected people to relate to what I had to say so deeply, and that has been the greatest gift - finding community and finding my voice.

Sure, I’ve taken the better part of three months to disappear — having your social media accounts hacked and deleted helps with that — and focus on my health, which is a full-time job.

I also took that time to douse myself in pleasure, bathe in its serene glow, drown in its inviting water. I started writing for myself again and am figuring out what pleasure, pain, and intimacy mean to me, alone and with others

Yes, I have imminent Big Decisions to make about my health and body, to keep the white-hot pain at bay, but for now I’ll take this newfound freedom at the intersection of pleasure and pain and see where else it will take me.

I can’t wait to find out.

Maia Leggott is loud, vulnerable and shameless about the shit we've been taught to keep quiet. They'll probably write a story about you.