This isn't my body.

a story about fibroids.

For a long time, I just thought it was irritable bowel syndrome (IBS); perhaps, as the memes said, “hot girl IBS,” a thing it appeared many of us suffered from. For a while, the cute internet identity mitigated the urgency to do much about it. I was getting bloated, a lot, more than I used to, but it also seemed unrelated to what I did or didn’t eat. I’d eliminate bread or beans one week or the next, I’d try (try) to reduce my seltzer, but mostly my belly would balloon up sort of indiscriminately, and it was starting to move from discomfort to pain. Eventually I talked to my doctor about it, and in the same visit I told her I was having unusual stabbing pains in the lower left part of my abdomen. She gave me IBS recommendations (nothing that I hadn’t already tried) and told me the stabbing pains were probably just related to ovulation during perimenopause. At that point, I’d begun to track my cycle pretty consistently and determined that the pains were indeed worse during that week; so I let it go and started to resign myself to the reality that I may simply have to endure being uncomfortable in my body. 

But then things got worse and new symptoms appeared. Not only did the bloating become so intense that I was unable to wear most of my pants (despite not having gained weight anywhere else), but I was also experiencing major issues with my bladder. It started back in 2020, shortly after my former partner and I moved back to my hometown of Cleveland, that every time I would lay down in bed—having just come from the bathroom—within a minute or two, I’d have to pee again. 

“I don’t understand what’s happening,” I would say when every single night the same thing would take place. I’d lay down, exhausted, but then have to get up again, with an urgent need to pee. Oftentimes when I went back to the bathroom, almost nothing would come out. 

This only got worse after that partner and I separated, in 2021. I’ve written about that quite a bit, so for longtime readers I will be repeating myself: it was traumatic. I was swallowed by grief, wholly consumed by it, and on top of that I had to relocate to a new apartment that I could hardly afford. I was underemployed at the time, and the financial anxiety was definitionally triggering. I was suddenly a kid again, feeling the terror of spotting an overdue bill on our kitchen table, feeling the stress radiate off mom who was working so hard but making so little. I was also very quickly in a new relationship, long-distance and complicated. All of my attachment wounds emerged in our early courtship, as they were bound to with us an ocean apart; as they were bound to when he did a number of things that intensely damaged my trust. My body felt so deeply unsafe, nearly everyday. 

The peeing thing got worse. The bloating got worse. And now I was having trouble “digesting” (my femme euphemism for pooping), a process to which I had given a lot of attention. In my orthorexic era, I learned about the mind-gut connection and became an avid devotee of a cleansing morning poop. For years I drank lemon water every morning to ensure it happened; later that would sometimes be replaced with coffee and a walk, but in either case, it was an extremely important part of my day. If I didn’t poop in the morning, I would suffer the whole day, stressing about whether I’d be able to later or not (usually I wasn’t able to). So I was committed to it. It meant not booking early flights, it meant waking up at 5am if I had to be somewhere at 8, just so I’d have enough time to let my body do its thing. But suddenly, it became inconsistent and I realized I wasn’t eliminating as much as I used to. I was carrying a lot more weight in my lower belly, even when I wasn’t bloated, which I knew wasn’t normal for me. Another problem with diet culture is that when you finally turn against it, you ignore things that don’t feel good in order to be a good feminist. I couldn’t complain about gaining weight because I’d given up that disordered thinking. But deep down, I knew something was wrong. This weight didn’t feel like normal weight, it felt thick and cloudy; it felt, as I’d sometimes cry out loud, like it wasn’t actually my body. “This isn’t my body!” is different from, “I hate my body” (a mantra of my eating disorder days). There was something different happening here.

Things got a little better in terms of feeling safe and stable. Peter moved in with me, we were slowly rebuilding trust, we were both making enough to pay the bills (though not making much). Then I got pregnant, unexpectedly. We freaked out, we got excited, we didn’t know what we were going to do. I made an appointment with an obgyn and I made an appointment at the abortion clinic, just to cover my bases. The abortion clinic appointment came first. I got my first ultrasound; the baby was dead, as I had, at that point, already guessed. 

This is a turning point in the story, though. If this feels like I’m writing a true crime mystery, that’s because our society turns learning the truth of our bodies into a whodunit. A very expensive, time-consuming whodunit. Do you know that Rumi quote about the task not being to seek for love but to remove all the things that stand in the way of it? It was like that with finding a diagnosis too. Work through doctor after doctor, hormone guru Instagram page after hormone guru Instagram page, bill after bill, supplement after supplement, keep realizing none of this is it. Our dead baby was the thing that led us to the key piece of evidence in the whodunit; the abortion clinic was the love that everything else got in the way of. 

“Do you know that you have a fibroid?” the nurse asked gently, as she rolled the transducer over my belly. 

“I don’t know what that is,” I told her. She pointed to it on the screen and explained that they are benign tumors and that they don’t necessarily contribute to fertility issues. But she thought I should know. She told me about some symptoms — bladder issues, bloating, back pain, heavy periods. I was already emotional from the confirmation that the embryo wasn’t viable, but this too made me want to cry. The recognition, the validation, the relief that there was a cause to what I was experiencing. 

After the D&C procedure that removed the dead embryo from my body—miraculously legal at the time—all my symptoms returned, and this time with significantly heavier and unusual periods. I made an appointment with a gynecologist to discuss fibroid treatment. I went through three visits that cost over $100 out of pocket, all of which simply confirmed that I had a fibroid. Finally, I got an appointment with a surgeon, a smug white man who told me he didn’t think the fibroid was big enough for surgery. He said it wasn’t a big deal. “My blood was boiling” is a cliché, but that’s how it felt in that office. NOT A BIG DEAL, SIR?! THANK YOU FOR TELLING ME WHAT IS AND ISN’T A BIG DEAL IN MY BODY!. I stayed calm but kept pushing. He finally agreed to do a saline ultrasound that could show us if there were potentially any additional fibroids that the regular ultrasound couldn’t see. He walked out without making eye contact; his resident assistant, a young woman, snuck back in the room and advised me to take a Motrin before the procedure because it tends to cause cramping. Still, I left that appointment in a rage. 

Then, Peter got his cancer diagnosis. 

I couldn't bear to deal with that terrible surgeon at the same time that we were going to so many medical appointments at the cancer center. I put fibroid treatment on pause and tried to focus on being there for Peter. I also started a new job, which offered a (low-paying) secure paycheck, but an extremely stressful commute and all the demands of a full-time professorship. Even with incredible students and kind colleagues, academia will never be a place for healing. 

Perhaps you won’t be surprised to find out: my symptoms got worse. 

By winter, we had gotten into the rhythm of our new normal, which was simply a lot of our days spent at the hospital. I decided to start coordinating with Peter to schedule appointments, so we could do both of ours on the same day. One less parking garage ticket. This also meant switching from the first hospital system to the Cleveland Clinic, which though still the archetype of the Medical Industrial Complex, seems to have a tiny bit more commitment to providing some semblance of care. And so, on new (worse) insurance, I began spending thousands (yes, thousands) of dollars on more appointments for the fibroids. 

I was also doing research. I am a trained researcher and every health issue that has impacted me or people I love, that’s what I do. It can be a helpful or destructive coping tool, but it’s not one I plan to abandon. More information is always better (for me). I’ve read dozens of peer-reviewed scientific studies on PubMed. I’ve read fibroid websites, and fibroid message boards, and fibroid Instagram pages. I have turned to the insights of holistic, anti-pharma anti-surgery holistic healers, and herbalists, and nutritionists, and acupuncture. Just as I half-joked about brain cancer after Peter’s diagnosis, I now feel like I have a minor in fibroid studies. 

I didn’t want surgery. I am a hippie at heart who has barely touched Tylenol in over a decade and for a very long time was able to maintain excellent health through diet, exercise, and managing my stress. My ability to do that was linked, in large part, to my former life of stability (my ex was financially secure, and I had a full-time job for most of that relationship; I also had free time that I filled with yoga and spiritual/wellness activities, which so many people can’t do). I was now in a situation that reflected the one endured by much of the population — a stressful job, money issues, illness, not enough time. All to the backdrop of a genocide, a hurting Earth, friends and family in crisis. And though I would have loved to commit to spending the next year of my life in a peaceful space devoted to shrinking my fibroid through diet and meditation and herbs, I knew that the conditions weren’t available for me to do that. And I knew that if I waited, the fibroid could grow and more could emerge. 

Fibroids disproportionately impact Black women. Even science is willing to say that’s probably in part because of the stress (terror) of systemic racism. There are articles that link fibroids to childhood trauma, environmental pollutants, and major life event stress. There is a lot of evidence that the root of most disease is from spending too much time in our sympathetic nervous system (fight/flight) and not enough time in our regulated, parasympathetic nervous system (rest/digest). I believe this completely. The problem with most of this literature is that it ignores the need for radical, systemic change (even when it names systemic culprits). But the problem with radical talking points is that they too often ignore individual agency, and the desire many of us have to be well. I’m indebted to radical disability justice organizers and crip theory scholars who write with nuance at these intersections: Leah Lakshmi Piepzna-Samarasinha, Eli Clare, Sami Schalk, Johanna Hedva, to name a few. I want to change the conditions of this world that lead to chronic stress, and in the meantime, I want to feel better. And so, I decided to go through with the myomectomy. 

That the doctors didn’t give me much information, at all, was not surprising to me after a year of accompanying Peter to cancer treatment appointments. Cancer patients probably receive more information than anyone because they are assigned a “team” of people from different units, but even with that, getting basic info about recovery (food recs, how long to ask off work, complementary modalities, etc.) was extremely limited and only came after we asked questions. The surgeon went into fairly specific detail about the surgery process, but then ended up changing his plan the morning of Peter’s surgery, so even when we received a lot of information, it wasn’t something we could count on. In my situation, I got a decent visit with the surgeon and his medical resident, the former who only wanted to talk cuts and sutures, the latter who took the time to say, “We believe you and want you to have a better quality of life.” But neither of them mentioned anything about surgery prep or recovery. Two days before surgery, I got a quick call from a fast-talking nurse who told me about needing to fast after midnight, but nothing else. Then, the morning of surgery, around 8am (I had to arrive at 6:30am) while I was already on the operating table waiting for anesthesia, an admittedly lovely surgical assistant gave me a rundown of what to do after surgery (some of which conflicted with a sparse printed handout I received later that day). Ten minutes before one of the scariest physical experiences of my life, I was expected to retain a pain med schedule, activities I could/couldn’t do, what to watch for that would indicate a problem, what color my blood should be, and so on. After she finished her rundown, the surgeon brusquely asked if I had taken the misoprostol¹ they prescribed, to be self-administered through vaginal insertion, the morning of surgery. I told him I did. 

“In the vagina, right?” he asked. Yes, I said. “Just so you know - they don’t dissolve, they’re still in you. That medication is actually better administered in the rectum, but people don’t like to do that, so when you’re asleep, we’ll move them from the vagina to the rectum. Just so you know, in case you see a pill when you go to the bathroom.” Then he walked away. 

I think, for some people, this would feel like an entirely non-consensual traumatic experience. I’m grateful I didn’t feel legitimately triggered by it, but I was extremely taken aback and uncomfortable. It felt like very murky “informed consent” territory. 

Much of what I was told — and everything I wasn’t — I had learned from the fibroid Reddit message board and talking to friends who had their own abdominal surgery stories. Like all of us, I am conditioned to think that I should wait for Official Information from the Doctor, but I know—as an anarchist, a feminist, a witch — that the omnipotence of a doctor’s authority is a social construct. A colonial, capitalist social construct. I am extraordinarily grateful that surgeons exist, and I also believe, steadfastly, in the importance of taking just as seriously the wisdom of personal experience, ancestral knowledge, our own intuition. Fibroids, like many issues related to uterine and other health issues associated with women², are extremely under-researched; the idea that “there is no proof” that certain things mitigate or exacerbate fibroids is in part because no scientist bothered to do research about it. The same goes for what works before, during, and after surgery. So I am also extraordinarily grateful for the mostly-women on my little Reddit messageboard, those Gramscian organic intellectuals, who offered their experience as a mutable guidebook for those of us about to go through the same thing. Blessed are the sharers of experience; blessed are the battle-scarred posters of the health messageboards who give us care.

The hospital wasn’t all bad, though. Here are some good things that happened that morning: The first anesthesiologist I met asked if I had allergies, and when I replied “bee stings,” he joked, “Well, no bees here, but a lot of WASPs.” Then he apologized for an inappropriate joke, but I was genuinely chuckling and told him I appreciated it. The second anesthesiologist I met complimented me on my eyelashes — she was an acrylic-nailed, eyelash extension femme herself; “I’ll make sure we keep those in tact,” she winked. The same surgeon who talked me through the recovery process also lovingly (it felt loving!) stroked and squeezed my hand when I started breathing in the anesthesia gas and got teary-eyed from nerves and overwhelm. There are good people in bad systems, I believe that—but their humanity emerges in moments of resistance, when they push against what the institutions ask of them.

I woke up alone, foggy and in so much pain. A few minutes later Peter and my mom arrived. I could barely talk, I was hurting so much. I wanted to try to go to the bathroom, all the pressure from the surgery made me want to expel whatever I could. But anesthesia wreaks havoc on a body, including the digestive tract. I made it to the bathroom with the help of Peter and a nurse. It was the first time I saw my incisions. They had told me it would be laparoscopic, which doesn’t require large incisions, though I knew there was a chance they’d have to cut more. It was jarring to see a two inch cut above my pubic bone, lower than the “bikini line” incision the doctor said he may have to do. Ultimately, this was a better cut in terms of healing, but I was never told it was a possibility, so it scared me. 

I slept for hours. One nurse tried to kick us out while I was curled in a ball in pain, barely awake. Peter pushed back and got us another hour. The effort it took to get to the car, even in a wheelchair, was awful. I was so nauseous. I desperately wanted water but it also made me feel sick. I dry heaved into the puke bag while mom and I waited for Peter to get the car. One of the worst parts of surgery is the gas they pump into your stomach; the pain of gas that you can’t expel is another trauma to an already very traumatized body (surgery is a trauma, living with fibroids can be traumatic). At some point while waiting for the car, I burped, a relief that got me through the drive home. The first two days were excruciatingly difficult. The pain was extremely intense, walking was very difficult. I opted against taking oxycodone, but was grateful they offered it — some of the people on my message board didn’t get the option for anything stronger than Tylenol. But I had also learned (from my sweet mom who has had far too many medical procedures) that oxy will constipate you even more than the anesthesia. I didn’t want to risk that, so I’ve been alternating between Tyelnol and Ibuprofen. 

By day four, things started to feel more manageable. I started taking short walks outside with Peter. My appetite returned. The worst of the gas pains passed. I’m exactly a week out as I write this and I’m still hurting, still very tired, still processing the emotional and physical aftermath of this saga, but I am doing well. Even though I’m still a bit bloated from the operation, it is extremely evident to me that the fibroid is gone. “That heavy, cloudy feeling is gone,” someone wrote on the messageboard, and yes, exactly that, I had almost forgotten how it felt to exist without it. 

My mission now is to practice real rest, which is not something I’m great at. Admittedly, after this year of exhaustion, it feels a bit easier. And I’m committed to exploring paths to fibroid prevention, which mostly boils down to stress reduction. I only have so much control over that, but that doesn’t mean I have no control.

I want better for all of us when it comes to health. I want a world without environmental toxins, without the violent stress of capitalism, war, genocide, racism, transphobia. I want a system of care that addresses root causes and takes into consideration our whole body, and our spirits, too. I want to have not had to spend $3200 out of pocket for this. But I am still counting the myomectomy as a blessing. 

Finally again I can say: This is my body. 

1. This is the “abortion pill” that the right is also trying to ban; it’s uses include more easeful surgical procedures, unrelated to fertility. What a time to be alive.

2.  The reality that women’s health is an under-researched battlefield  is relevant given the history of patriarchy. What’s even more of an under-researched battlefield is trans and nonbinary health. Of course a transman or nonbinary person can struggle with fibroids. And: most people who get fibroids are women. I prefer to discuss this as a “uterine health issue” rather than a women’s health issue, but when talking about the medical industrial complex, we gotta name misogyny.