Operation Boot the Ute

A roller coaster, a national film premiere and a reigniting of purpose

The Roller Coaster

The call comes on a Thursday, but I don’t know it at the time.

I’m on the other line with my brother so I don’t pick up the call and assume they’ll leave a voicemail.

No voicemail.

I think nothing of it.

On Sunday evening I’m getting off the subway after all day at a queer stoner market and drag show that’s left me floating on clouds of beautiful queer connection and oh, so much weed.

New Voicemail.

My phone chimes as I come back to the land of cell service. (Come on TTC, you can do better).

My AirPods are nestled in my ear so I call my voicemail and wonder who could possibly be calling me at 10pm on a Sunday?! That leaves a message? My first thought is “Who died?”

“Hi Maia, it’s Dr. So-And-So’s office, we have a p-*muffled*-urgery date for you. Give us a call back when you can, take care!”

I’m super fucking high. I’ve been smoking joints and doing dabs for seven hours. I adjust my AirPods, turn up the volume and play the message again.

“Hi Maia, it’s Dr. So-And-So’s office, we have a p-*muffled*-urgery date for you. Give us a call back when you can, take care!”

No fucking way.

Heat blooms in my chest.

I immediately call the hospital and enter the wrong extension. Because I’m hella high and forget that it’s 10:30 PM on a Sunday. Someone answers. I panic and hang up.

I get myself home and settled on my velvet green sofa. I remove my headphones and call my voicemail again, this time putting it on speaker.

“Hi Maia, it’s Dr. So-And-So’s office, we have a po-*muffled*-l surgery date for you. Give us a call back when you can, take care!”

Again.

“Hi Maia, it’s Dr. So-And-So’s office, we have a potential surgery date for you. Give us a call back when you can, take care!”

Holy fuck.

It’s happening. The hysterectomy they told me would be in about a year, about a year ago. I’m shaking.

It’s important to note that a hysterectomy is not a cure for endometriosis. Endometriosis is inflammatory tissue that invades other parts of the body, like the diaphragm 🙋, but is most commonly found in the pelvis. A hysterectomy will cure adenomyosis, which is also suspected in my case.

I’d resigned myself to the fact that COVID had pushed surgical wait times to be even longer and didn’t expect to get this call for a few months.

But it’s coming now.

I text my long-distance queerplatonic partner who booted their ute a few years ago.

I figure out that the delayed voicemail must be from the call I missed on Thursday afternoon and wait to call back first thing in the morning.

At 9:34 the next morning I get a text: Did you call?

Holy fuck I forgot to call. How could I forget to call?!

I phone the office and they answer. They know my name. I can hear the hesitation in their voice as they let me know they have a surgery date for me but could I hold on and could they possibly call me back but just a second they’re looking here … okay yes they’ll call me back but the date they’re calling about is November 3rd — next week — would that work for me yes it would I’m unemployed okay am I having a hysterectomy next week they’ll call me back and they appreciate my patience.

I’m shaking.

The tears come, heavy and fast. Relief floods my body. I’m paralyzed by fear. I’m alone.

My anchor partner and I are managing an unfortunate miscommunication and messages are flying at me while I’m on the call, I can’t give it the attention it deserves but I also don’t have my usual support from them in this moment so I feel a little unmoored.

I text my waiting pal the details and call my mum, my voice shaky. She came to stay with me for my excision surgery in 2017 and will do the same now if I’d like her to.

I sit on my balcony with a joint and take a minute to absorb the news.

They’re going to cut out my uterus.

A small organ that is the source of so much pain, suffering, and dysphoria.

There are so many thoughts racing through my mind. Is this the right decision? I don’t want or need my uterus. I already dealt with an unplanned pregnancy and abortion - I don’t need any more. But this is a major surgery. A major, organ-removing surgery. My third surgery for endo. I’ll keep my ovaries so as not to be forced into medical menopause. They’ll excise whatever endometriosis they find. They’ll laparoscopically cut out my uterus and then pull it out through my pussy, along with my cervix, and sew it shut where the gateway to the womb once existed.

Will I still have to get pap tests, since I won’t have a cervix to scrape? What if I want to keep my cervix but boot the ute? I think I derive some serious pleasure from cervical stimulation and I don’t know if I want to lose that.

Will this affect my sexuality? My libido? My ability to orgasm or experience pleasure? Do I want to take that chance having finally gotten back in touch with my sexual self after endo stripped me of that identity?

How will this change how I feel about myself, my gender, my place in the world?

All of these thoughts and more have floated through my mind over the past year, but this brings them sharply into focus.

They call me back and let me know that they’re waiting to hear from another patient to see if they’ll switch their date, November 3, the date they said yes to before I got the chance. They’ll let me know as soon as possible.

They’re going to cut out my uterus.

I wonder if they’ll let me keep it.

The next morning I call my specialist’s office to check in.

Of course, the person who said yes to November 3 doesn’t want to give up the date. I remember when I was so desperate for a diagnosis, for answers, for relief from pain that consumed every facet of my being. No way could I take this away from someone else. Next week isn’t my time.

“I’m sorry for the roller coaster,” she says to me on the phone. “I’m waiting for a few more schedules to come together before I can give you another date, but it will likely be in November. We appreciate your patience.”

I’m flooded with a heady mix of disappointment, frustration, and relief. Now at least I know it’s coming and can mentally and physically prepare for it. It feels less imminent, but more real.

They’re going to cut out my uterus.

~

The National Film Premiere

That day happens to be the Canadian premiere of “Below the Belt,” a documentary on living with endometriosis by American filmmaker Shannon Cohn.

I’m nervous, to say the least. I haven’t seen or spoken to many people from the endo community in some time because I kinda feel like a fraud advocating when I’m feeling good, like I don’t have a right to use my voice if it doesn’t come from a place of pain. (I realize my logic is flawed). Plus in-person events are still kinda intense.

I meet up with an old university pal to smoke weed beforehand, obv. As soon as I see my first familiar face inside I can feel the nerves dissolving slowly.

This is where I belong. These are my people.

I see my specialist there with his team so I go up to him to say hi, knowing he’ll have no idea who I am.

“Hi, Doctor. I’m Maia. You’re gonna be taking my uterus soon!”

“Oh hi Maia, I know who you are.”

We’re interrupted as we’re ushered into the theatre to begin but I’ve done it. I’ve made contact.

The film is beautifully made and tells heartwrenching stories of resilient endo warriors. It brings tears to many eyes in the audience and I’m sure echoes the experiences of many patients in the room.

I’m shocked to see the film didn’t carry any sort of content warning and then went on to show graphic images of surgery, a story of pregnancy loss, and use extremely gendered language.

I’m also sad but not surprised to see zero queer representation or representation of any narrative other than the cis-heteronormative, fertility-centric one that’s shoved down our throats by doctors and practitioners and anyone who views and treats endometriosis as a “woman’s disease.”

Not 👏 everyone 👏 with 👏 endometriosis 👏 is 👏 a 👏 woman 👏

I’ll say it until I’m blue in the face. Until there’s some evidence that the medical community gives a shit about endo patients beyond fertility. Until there’s some evidence that anyone gives a shit about PEOPLE with endo and not just women.

There’s a statement - after the film finishes - that unmeasured numbers of transgender, nonbinary, and gender-diverse humans also suffer from this illness, and face far more barriers to care, and must be included in the conversation. So why weren’t they?

We are not an afterthought. We are not token images to flash in a film or on a slideshow in a performative attempt to be inclusive.

We are people. We are patients. We suffer from this disease just as deeply as cisgender, heterosexual women but don’t see any representation of our stories anywhere in awareness or educational initiatives.

The panel following the film was an excellent opportunity to include alternative representation but again the chance to include a different narrative wasn’t taken. There wasn’t even any patient representation on the panel. If the event was intended to discuss how clinicians can better care for endo patients — let the patients have a voice.

There is no acknowledgment in either the film or the panel of the major diagnostic advancements made in ultrasound technology, or the incredible power of cannabis as part of the multidisciplinary approach to managing endo. Not to mention that the title in itself, “Below the Belt,” perpetuates the idea that endometriosis is only found in the pelvis when we know that it’s a whole-body disease.

Yes, the fact that a film about endometriosis premiered in Canada to so many people is a huge win. Having this magnitude of visibility and education for future doctors and surgeons and nurses and physiotherapists and every person involved in caring for someone with endometriosis is a tremendous success.

But there is still so much work to be done.

The Rekindling of A Purpose

I feel a fire ignited inside of me this week that I haven’t felt in some time. The fire of fighting for inclusion and representation. The fire of speaking up for those who can’t speak up for themselves or who are too afraid. The fire of change that’s coming to the way endometriosis is received, treated, and managed.

If this event taught me anything, it’s that the conversation around endometriosis and inclusivity is much further along in Canada than it is south of the border. You see it in Canadian endo organizations like The Endometriosis Network Canada (TENC). Their website uses gender-neutral language and blog posts all contain content warnings for their sources. EndoAct Canada has also made strides towards more inclusive care for endo and acknowledges the unknown impact of endo on trans, nonbinary, and gender-nonconforming patients.

Events like this are essential for bringing together practitioners and patients in a way that equalizes the power dynamic a little. It can be incredibly scary and intimidating to seek help for an illness like endo, our lives are in the hands of people who don’t believe us for years on end. Putting us all in a room together emphasizes our humanity, our shared goals, our fallibility, and the importance of community.

Clinicians and practitioners have much to learn from patients about the endo experience, just as we have much to learn from them. There needs to be a level of humility, openness, and curiosity among all who have anything to do with endometriosis. This disease is under-researched, underfunded and sorely lacking a national action plan that can start to address the $1.8 billion annual cost to Canadian society.

So while I await a date to Boot the Ute, starting the process and being with other endo peeps ignited something I let “feeling better” take from me - my voice. And it feels damn good to be back where I belong.

Using it.