TW: mention of early pregnancy loss

I never had a regular period.

“The end of the world is starting,” was my code for it growing up.

It always felt terrible.

My “normal” period was predictable monthly pain and highly unpredictable, irregular blood flow. For more than a decade, I diminished my own pain, while society reinforced this attitude socially and medically.

I don’t want other women and transgender people with uteruses to do the same. Which is not to say that hysterectomy is the goal. Quite the contrary, our pain has been ignored for too long.

What causes endometriosis? Science doesn’t know yet.

Why are those who produce the next generation medically neglected the most—whether they choose to use this ability or not?

A Trip Down Misery Lane (The Decade+ Before Hysterectomy)

I was absent for the largest possible number of days every year in middle and high school—all the way up until I quit to finish my degree online (back in 2008, wow!).

The reason? Period pain.

I’m quite certain I would have missed lots of school regardless but the reason I was out the maximum days allowed—and the main reason my mother had no qualms along with my high grades—was the uterine pain that came and went on its own haphazard timeline.

It wasn’t until my mid-20s, while watching a Buzzfeed video, that it occured to me I might have endometriosis. The immediate next thought was, “her pain is way worse; no you don't.”

By this time in my life, I’d come to expect one to three periods a year. At least one of these periods were always guaranteed to be so heavy that I wouldn’t be able to leave my house.

In my late 20s, I was fortunate enough to start a heavy period like this while on a vacation with work friends in Mexico. The bleeding was so heavy I had to change out a super absorbent tampon in the middle of a five hour flight. That night at our hotel in Chicago, despite only sleeping for six hours, I bled a baseball sized circle onto the hotel sheets. I woke up and disappeared into the shower to sit and cry before the five-hour drive back to our small town.

When I met my partner in early 2020, I got an IUD for the first time. I managed to grab an appointment at Planned Parenthood weeks before the world shutdown.

But, as it turns out, the gynecologist (who quickly recommended I get tested for diabetes after looking at my fat body) didn’t place the damn thing correctly.

So, that little copper IUD hung out in my uterus for a year and half until I was able to get it removed. Which fucking hurt.

And wouldn’t you believe, they wanted to put a new one right back in me:

“Copper was the poor choice. You need the one with progesterone for your PCOS. At least until you can lose 100 pounds; have you heard about Ozempic?”

Meanwhile, my body pulled an uno reverse card and decided to never stop bleeding. Six months later, I started losing chunks.

Yup. I started calling them sea creatures. Too much information? Welcome to my two-year hell.

Creatures From The Red Lagoon

The week before surgery, I was sitting in bed watching TV when—seemingly out of nowhere—a fourth cup of blood released as though a valve turned.

I felt the chunk hit my cervix.

The high-pitched noise that escaped me was all-to-familiar to my long-term girlfriend, who immediately held my pillows back as I jumped up and quickly waddled to the toilet. Here, this throne where I bleed and watch the hours of my life drain into porcelain, the thick glob fell with a heavy, “plop.”

“Uuugh, I heard that,” my partner called from the bedroom.

I thanked God that this thing-called-my-uterus had a date with death. One of us needed to be laid to rest, and I wasn’t sure who was going to win for a while.

Two years prior, when my IUD was taken out, I thought things would start to get better. Instead, the bleeding increased and I started losing congealed bloody chunks, some of which were the size of a finger in length and girth.

Not to mention the physical impairment: I couldn’t walk to the end of my street without being in excruciating pain.

Yet when I told doctor after doctor about my symptoms, asking then demanding help, all they could offer me was birth control and weight loss.

Let me state that again for emphasis: I went to doctor after doctor telling them about the chunks of globular blood I was losing daily and they offered me birth control and weight loss. Meanwhile, I was bleeding to death on a regular basis:

My blood work showed that my iron was low and my blood cells were tiny—something I later learned is a sign of excessive blood loss.

One day while in a work meeting, I sat bleeding on myself as chunks collected within me. When the hour was over, I rushed to the toilet to let the collection of them—collectively bigger than the size of my whole hand—fall out.

It was too horrendous not to get a picture.

If the next doctor was going to offer me birth control and weight loss, I was going to shove the image of my globulous, creature-like blood clots in their face.

[Not pictured; you’re welcome].

The Choice: My Life or The Child I Might Have

It’s funny how we open up to hair stylists and barbers; I know I overshare (whoops).

At my recent appointment, I found myself telling them that while I am exceedingly appreciative for my hysterectomy, I would have preferred a medical system that actually gave a fuck about my well-being and was working to help the millions of people experiencing uterine pain.

Instead, I had to do massive research to diagnose myself.

I ascertained that only adenomyosis fit all of my symptoms, and that it was likely I had endometriosis as well.

My experience, both in pain and medical failings, are all too commonplace. I read thousands of experiences from people who were all trying to help themselves because no one had solutions for them. God forbid they also be fat; the combination of medical neglect and fatphobia can be deadly.

Around the same time, I went full-time at work. With the privilege of private insurance (I don’t think this is coincidental in the slightest), I was able to find a surgeon who was willing to listen.

“I need my life back,” I told the nurse through tears.

I was prepared to demand a laparoscopy—a small surgery that uses a tiny camera—to check for endometriosis. But I didn’t need to.

Opposite to my previous experiences, the surgeon began by asking me what I wanted. He then offered to explain the buffet of potential options, based on what he saw in my ultrasound (which I’d gotten a few months prior). Turns out, he spotted signs of adenomyosis right away.

I was so stunned that when he asked if I knew about adenomyosis, I said no like I’d never heard of it and sat back to enjoy the fifth grade explanation of having a, “swiss cheese uterus.” Which is a nice way of saying that the lining of my uterus was growing through the muscle tissue like an ever-expanding spider web of pain.

He then told me about each potential treatments, which overall were laughable:

• IUD with progesterone: Use this to slow bleeding and hopefully manage pain until you have a child; after which a hysterectomy is recommended. Nothing to offer for losing clots of blood.
• Ablation of the uterus: They burn off the interior lining (not an exaggeration) of the uterus to stop the bleeding. But this has been shown to make adenomyosis worse because it traps the tissue in your uterine walls, instead of letting it get out.
• Hysterectomy: Get those reproductive organs out of there. This is the only definitive way to treat adenomyosis.

Furthermore, the diagnosis is evidence-based but presumptive. My surgeon seemed confident in his assessment of my ultrasound, so much so, that other possibilities weren’t discussed during my first appointment. The surgeon was happy to proceed with a full hysterectomy, keeping only my ovaries for hormonal balance and long-term health (especially as a younger person).

Between the two, I am extremely appreciative to have been in a position to make the autonomous choice to receive a hysterectomy. And, I wish there were better options.

Finally, blessedly, I was able to make a choice for myself. To prioritize my well being. To give me my life back and allow me the ability to do anything and everything I am capable, body and spirit.

Turns out, birthing tiny angel monsters (aka babies) ain’t one of them. Not in this lifetime.

And with that, the surgeon told me I’d be scheduled for surgery as soon as insurance approved it, which was highly likely given the lack of real alternative options.

A few weeks later, in February of 2024, I was scheduled for surgery on May 22.

The Questions & My Answers

I wanted to ask myself questions leading up to the surgery. Partly to give me courage and to convince myself that I’d live through it. And, partly to remember what it felt like before.

I always imagined having kids—as late in life as possible and only one, I said. But I assumed it would eventually happen for me. I was terrified of grief hitting me over the head after surgery. So I wanted to make sure I didn’t discount my pain once it was gone.

This realization meant I started the grieving process before surgery too. I wrote a poem on the bittersweet nature of making the choice. I thanked the one pregnancy that ended in miscarriage before I even knew of its existence in my body; spoke the name I’ve never shared and let go of what my body likely would not have allowed me to create, with or without hysterectomy.

I’ll leave the rest for the Q&A. But spoiler alert, it came and went; and like all things in life, I learned to trust myself.

I find I am always spiraling more toward trusting myself.

Before Hysterectomy

Q: How do you feel?

Ready to get it over with. Really, I just need to have faith. I’ve done all I can do; I’m prepared and preparing, I’ve got a great attitude, a fantastic surgeon, and private insurance. It’s all good! My fears are all tied to being fat. Damn; doesn’t that suck?

My surgeon has never even mentioned it, but I know (and my paperwork confirms) that I have to drive to the bigger hospital because I’m seen as more of a risk. I’d rather be at the better hospital anyway…but that’s hardly the point. My paperwork said, “(super) morbid obesity.” The drama!

For the surgery, I’ll be on a table that will tilt like a see-saw so my head is lowered and my feet are raised. Gravity will move my other organs out of the way, making access easier for the laparoscopic surgery.

In rare instances, a person’s body cannot handle this and they have to make a large incision. Ensuring my lungs are clear and healthy is why I stopped smoking prior.

More than anything, I want everything to go smoothly. I want an easy surgery with a chill recovery. I’m doing everything I can right now to hold the feeling of that ease in my being.

I’m excited for the plushie my partner and momma are to pick out for me while I’m in surgery. Just the thought makes me want to cry! What a sweet way to wake up.

Q: What is your current reality?

A lot of bleeding. I’ve been bleeding and persistently losing globs for a couple weeks. The blood is still bright red. I wake up in the middle of the night and have to clean up. It’s unending.

I had to take a break from smoking so I’ve been using edibles. It’s been a wonderful change. I feel more clear-headed and less reliant. I find it encourages me to enjoy THC for fun and relaxation, rather than using it to mask symptoms of my mental illness. Which means I’ve had a couple really rough days too, where I would have smoked myself under the floor to escape my own brain if I could have.

But not being able to made me more cognizant of the shift and aware when I was having a mental health episode, rather than feeling as though I should have been able to avoid it or outsmart my mental illness by masking the pain.

It’s also shown me how much progress I’ve made and that I am mentally well far more often than I give myself credit. My years of shifting how I treat myself have become patterns now; it’s not as difficult because those pathways in my brain have been walked again and again. But I’ve been acting like I was still making the trail.

I’m excited to have some time off work. It’s my first vacation since I started working here, which shocks the shit out of me when I step back and realize I did that to myself. I let my anxiety run the show. Even in this week leading up to the time off (that I’m only taking because it’s wholly medically necessary; dear lord), I am trying to do the most so my worth and value remains evident.

Is this necessary or am I driving myself crazy? I don’t know! Probably the latter but if I truly felt that I’d stop putting too much on my own plate.

Q: What are you most excited about?

Getting my life back. Unexpected gender euphoria. Feeling lighter when I return to being active. Getting into the gym to lift weights, running—feeling the difference in my body without this metal liquid goop weighing me down.

I’ll be curious if I’ll just be a more relaxed person after, because this pain has just slowly gotten worse over 15 years. It’s hard to know truly how much better I can feel when I have no clear baseline to refer to.

Adenomyosis is progressive. It immediately explained the horrible periods I had throughout high school and why I would miss school once a month. I gaslit myself over the years, as though I was just a teenager who didn’t want to go to school, instead of a kid that was fucking exhausted and doing their best.

I’m excited to be able to walk like I did when I was a teenager and young adult. I can remember being able to walk endlessly. I never understood why my body stopped being able to do that. Turns out, it’s not just adenomyosis but a fibroid on my right side throwing my hip out of whack.

I’m am stoked to have a body that allows me to be as active as I want. I am excited to have significantly less pain in my day to day life.

After Hysterectomy

Q: What do you wish you could tell yourself before?

I was worried about the sense of loss. Losing the ability to create and birth life. But I am discovering a growing sense of, “My life is my own now.”

Not that it necessarily wasn’t before…but I think any birthing person can relate to a sense of uneasiness around pregnancy and the social, financial, and spiritual implications of motherhood, of which I am no less affected by as a genderqueer person who was raised as a girl in this patriarchal society.

It is becoming real to me that this source of anxiety is gone. I will not suddenly find myself completely rearranging my life and giving up my freedom because of an unplanned child—no matter how beautiful they are.

I get to choose parenthood with my whole self. I don’t have to worry in my own body about regressive abortion laws. I realize how much I feared losing myself to the role of motherhood, despite knowing the limitless power of moms.

I am not a way-station for an important life. The important life is my own.

I remember journaling during middle school upon realizing the boring path ahead of me, “college, job, marriage, work, kids, retire.”

I was not sold on the American Dream.

I would love to sit next to that person and tell them about the rad alternative paths we took and continue to take in life. I want to make them proud. And I know they are right now.

They were afraid their life would be taken away from them before they even got a chance to bumble around and figure it out.

They thought they had a timeline: 15 years max before you bring children into this world and create the deep curves of an unchangeable path.

They would be ecstatic to know I chose us.

What I’m Working On This Month

My last semester of school left me feeling super overwhelmed and lost in the woods. Both classes offered lots of great information, but I started to realize I didn’t have the bandwidth to apply what I was learning. At first, this led to lots of conversations with myself that went something like this,

“Why are you doing this? Is this even what you want to do? You’re never going to be able to produce your songs to the level you want. Have you wasted two years just to realize you should have invested that money in hiring people? Why do you think you can learn it all?”

So I took a step back. A coastal trip with my mom was the perfect excuse to let it all go for awhile and get back in tune with my center of purpose. After returning home, it became obvious that I needed to take the semester off.

However, I also knew that I didn’t want to stop making progress in my education. I needed a plan for applying everything I had learned. A week of research led me to a lot of fabulous discoveries (like this music production masterclass). And a newsletter from songwriting mentor, Connor Frost inspired me to learn about his accelerator program.

After some back and forth and a discovery call, I decided to work with Connor this semester. I’m taking a step back and learning to “walk before I run,” with my songwriting.

At the end of twelve weeks (before the end of this year!), I’ll have four basic song demos and the ability to perform my songs for an audience with just my voice and a keyboard. If you know how much I’ve struggled to go from Voice Memos to song demo, you know this is a huge deal for me.

I’m developing a process for finishing my songs, which is something I’ve never had before.

Creative Goals Check-In

• Get Back to Waking Up by 6am ❌
• Research Substack and Decide Whether to Add New Channel ✅
• Sign Up to The Gym Down the Street ✅

Some of you may have noticed I missed my first month of sending this newsletter in September. Yes, I cried about it even though I skipped it for my mental health. C’est la vie.

However, it felt awesome to return and see how much I stayed true to these creative goals over the two-month period. Despite not resetting my 6am wake-up time, it’s still a weekly task—one that needs a better why to motivate me into less sleep (that’s hard, ya’ll!) or new routine (blergh).

But I did join my local community center, and I am going to start using Substack (and Medium!) as distribution channels for this newsletter (or at least my favorite issues from it).

This Month’s Goals

Create A Morning Routine That Makes It Impossible to Sleep In

I can’t make myself wake up earlier because I keep trying to optimize that time. Nope, ain’t gunna work. Turns out what I want from my mornings is to move slowly and give myself joy.

Therefore, a morning routine that might actually work would include plans to shower, drink coffee, (actually have time to) meditate, read for entertainment (unless a different mood strikes me) or catch up on a show I’m watching (I need more time to binge Heartstoppers, ya’ll).

Heck, maybe I’ll even start playing Nintendo Switch in the morning. I want to reserve this time and space for the me who isn’t subject to time: what is the best feeling thing I can do? My new morning routine is simply about creating dedicated time to feel good.

Start Going to The Community Center Once A Week

Nothing makes it harder for me to start a new task like asking myself to do too much. So, this month, I want to go to the rec center once a week. I can take a class, go swimming, or get familiar with the weight room (the thing I so miss but am most nervous to explore). Low pressure, get consistent, and then it’ll be easier to add more as I start wanting to prioritize it—rather than taking all the fun out of the new environment by placing demands on myself.

Publish My First Newsletter Issue to Substack & Medium

This final quarter of 2024, for me, is about treating my creativity like my career. Which means practically considering potential revenue streams and creating a business plan for my work.

Every business starts with the product, which in my case is this newsletter and my songs. I also consider my poems potential products but the revenue stream is less direct (sell books and make income from distribution on social and writing platforms). This newsletter has the potential for direct income (paid subscriptions) and distribution income on social and writing platforms. My songs, by far, have the most potential for generating several income streams. But, I’m not ready to release any songs—I’m at least six months away from this, if not more.

Therefore, I’m sinking into enjoying the process of unfolding. It’s easy to feel embarrassed by the things we don’t know. But I want to embrace what I don’t know and not be afraid to figure it out while sharing my process with others.

So much of our culture encourages us to only show up when we’re perfect, sanitized, unreal versions of ourselves. But I want to live in a world where we are empowered to be our whole selves. I hope that the more I align with myself and am true to that, the more it gives others the permission to do the same.

Finish My First Song

Like, really finish it. Have a proper demo with vocal and piano track that I can take to a venue and perform. The song is called, Fear the Boogeyman. Only one week into working with Connor (it’s an amazing name for amazing people, what can I say) and I’m feeling significantly more empowered on my journey toward publishing a debut album. Here’s to enjoying the journey!

Things I Love

• Heartstoppers: Recommended to me by my barber, I haven’t been this in love with a show since Ted Lasso and Steven Universe. Kind-hearted queer stories are my favorite; please recommend more!
• Hair for Humans: Speaking of my barber, I’ve found the best in PDX, whether you’re queer or not. I got the most gender-affirming haircut of my life and I’d love to shout out their business. You can also check out my haircut on their social media. Psst: They recommended this hair balm and I am obsessed; I ran out a couple weeks ago and I can’t wait to get more.
• Jon Batiste - Für Elise (The Beethoven Blues): Jon effortlessly infuses blues into this classic from classical music, providing something both beautifully refreshing and familiar.

As always, thank you for reading.
With love and badassery,

Conner Carey