Endometriosis and the soft life

There is no cure for endometriosis. I’m currently recovering from my second laparoscopic excision surgery, five weeks post-op and watching as the five entry points along my abdomen slowly stitch themselves back together, scabbing and itching, changing the shape of my bellybutton. I’ll have two new scars, since my first surgeon made only three. One of the new ones is a small skin flap folded like thick pie crust above my right hip bone, next to the tulip I branded into my flesh with a lighter when I was a teenager. I’d say it’s cosmic that I chose that spot to scorch so long ago, more than a decade before my diagnosis, but really it was logic. Even slightly drunk and swirling in a haze of my friends’ cigarette smoke, I understood I had a high tolerance for pain and particularly in that spot, an inch from my right ovary. I don’t remember the lighter hurting.

My memories of pain are sharp and vivid. I’m 17 years old and screaming on the couch in my mom’s living room that something is wrong something is wrong as an ovarian cyst ruptures, and suddenly I’m in the ER being spread open and catheterized in front of a group of student doctors, too delirious to consent. I’m 21 and crouched behind the bar of the pizza place where I work, sweating and losing feeling in my legs as my left ovary slowly rips itself apart. I ask a coworker to cover my table for a second and she tells me to take a Midol. At this point, I assume she’s right; this is just what a period feels like and I’m being a baby. I suck it up and finish my shift, muscles quaking. I’m 24 and land a dream job where I have the opportunity to fly around the world and write about video games, and I discover the stress of traveling exacerbates my symptoms of incredible pain, nausea, dizziness, heart palpitations and vomiting. Endo is a disease of inflammation, rabid hormones, and misplaced cells that thicken, scar and bleed each month; I feel it in the form of dense fibers and burning lesions deep in my bladder, ovaries, bowels and pelvic bones. I’m forced to miss a handful of important professional events as my body breaks down in new and surprising ways, but I make the most of the opportunities at hand. Two separate times years apart, I’m brought to my knees in the security line of the Frankfurt airport, trying not to scream, pass out or look too suspicious to the gate agents. I’m told this is normal and I push through. Eventually, the nausea is constant and I’m barely able to eat. My brain is mush; I’m vulnerable in ways that won’t become clear until years later, in therapy. Each new doctor runs tests, shrugs and sends me to the next specialist. I become skeletal. A flight attendant asks if I’m a ballerina. I’m waiting to die.

I’m 30, it’s 4:30AM and I’m puking in the bathroom of a hospital waiting room in Austin, Texas. I’m in agony, I weigh less than 100 pounds and it feels like my organs are failing, heart- and ovary-first. The hospital discharges me with anti-nausea medication and a pat on the back, just like always. I feel insane, just like always. I stay in Austin to finish my work assignments, filing stories later that day.

My gynecologist accidentally discovers endometriosis in my body a few months later. There’s a 5cm chocolate cyst on my left ovary, obvious enough to spot via ultrasound while checking the placement of my new IUD. The diagnosis hits me slowly, and then like a truck. At first I blame birth control for keeping my illness hidden for so long, but today I have more anger for a medical system that doesn’t respect or properly treat women’s pain, and views our diseases through the lens of fertility first and always. It takes more than a decade for most people with endometriosis to receive an accurate diagnosis, and our stories of dismissal and improper care carry the same miserable rhythm. I’m 37 now and still reckoning with all the ways this disease has haunted my life. 

My first excision surgery in 2019 addressed bladder lesions, an endometrioma, fused organs and adenomyosis, and the procedure nearly took my left ovary. It didn’t, and I recovered within two weeks. I was able to resume a fairly regular lifestyle, including working out, hiking, camping, traveling and eating. I was able to urinate without pain. For a few years, the daily cramping and nausea I experienced was manageable, especially in comparison to pre-operation levels. I was never completely symptom-free, but I lived like I was cured.

The second round hit differently. 

I started tracking my symptoms for the second time in March 2023, once the hotspots in my lower abdomen and bouts of fatigue grew too invasive to ignore. I was living between Phoenix and Brooklyn, regularly traveling cross-country and internationally, and I spent too many flights curled into a ball and buried in the hood of my sweatshirt, silently begging the dense pool of ripping, burning, stabbing pain in my right ovary to stop stop please stop. I moved back to Phoenix full-time, and as my daily levels of discomfort increased, the world shrank in ever-tightening circles around my tiny brick bungalow. 

London, 2024: I’m leaning heavily on my partner and stumbling out of the Emirates after attending my first Arsenal game, ears ringing, heart racing, legs numb. It’s not from noise or excitement, but from the slow explosion on my right ovary, expanding deep under the skin and fat and muscle, searing through nearby organs and seeping into the marrow of my hip bones. I push through the crowds in a deadened bubble of dissociation. 

Orlando, 2025: I do the same at Universal Studios in Orlando. My partner and I are prepared to pivot our vacation plans as the beast in my body dictates (I hate this), but I’m determined to attend the first week of Halloween Horror Nights. We rest in the hotel room for a full day beforehand, and we make it — walking is hell, the lower half of my body is on fire, I could pass out any second, I nearly puke in line for Terrifier — and have a great time. My body breaks down at a heightened pace for weeks afterward, with increased vomiting (in public, no less), pain, full-body inflammation, fatigue and brain fog.

Tucson, 2025: We try a road trip for my birthday and get tickets to see Trixie & Katya two hours to the south, with a stay at the local haunted hotel. We make it to the show and it’s excellent, but I’m miserable. I’m so weak I can barely stand, my whole body is tingling, I’m dizzy, I’m in agony, I can't eat and we cut the weekend short. I realize car rides can be just as excruciating as flights.

Phoenix, 2026: I’ve stopped making plans to leave the house. My muscles throb in time with my heartbeat, my head is full of electric cotton, my pain is constant and increasing. If I do have to go somewhere, it takes hours of mental and physical preparation, and each trip depletes my permanent health bar by a tangible fraction. I am unable to write.

My second laparoscopic excision surgery takes place on Friday, February 13, 2026. The doctors give me heart-shaped bandages because it's nearly Valentine's Day. The procedure removes a chocolate cyst on my right ovary, snips dense threads of tissue connecting my left ovary and bowel, discovers hidden pockets of disease and scrapes away inflammatory lesions everywhere, including on my bladder. I wake up, internally rubbed raw and cauterized, and grab my right shoulder. It’s burning like the muscles and bones are being fried in hot oil, and my diaphragm feels like a popcorn bag halfway through its microwave cycle, crunching with each breath. The nurses say this is common and I discover a new post-laparoscopic fear: Trapped carbon gas can irritate the phrenic nerve and result in excruciating shoulder pain that makes you want to rip your fucking arm off. I previously thought constipation was my biggest concern after surgery, but now it’s this.

It’s also this, the state I’m stuck in. It’s been about a month since the second procedure, and my body still feels like it’s in the thick of recovery, irritated and exhausted. I was told I’d feel better in roughly two weeks, and based on my first surgery, I trusted the timeline. While I am definitely in pain in fewer places, there’s still a black hole in my lower-right abdomen. It’s a heavy, white-hot sphere that’s always there, pressing hard and twisting, making acid rise in my throat and causing a prickly kind of full-body tenderness that only intensifies as the day (and my monthly cycle) progresses. I barely have an appetite. Peeing sucks again. My muscles tremble after a few minutes of use and my mind is pumped full of sludge. I’ve learned that sometimes after surgery, the pain simply lingers; the nerves are raw from years of distress and so they just keep pinging, even once the visible cysts and adhesions are removed. Meanwhile, fresh disease is spreading inside me, always.

I’m so tired. I craved a moment of relief. I expected it, and now I’m trying to gracefully deal with another betrayal by my own anatomy. I’m following up with my doctors, starting pelvic floor therapy and trying medications that might help, but I’m also being realistic about my new baseline.

I’m 37, but my body feels much older. I don’t know that anyone passing me at the mall, in the auditorium, at the amusement park, on the street would know in these moments that my body is under violent siege. I’m not sure that close friends or family would be able to tell — but I’m trying to get better at letting them know (hiii). I’ve been downplaying my pain even to myself for so long that dissociation is my default state, a thing I have to actively shake off. I don’t know how to gauge or express the severity of my pain, how to describe the constant brain fog or sudden mood shifts, how to convey the way this disease feels all the fucking time. If I were to complain every second I felt endometriosis burning through my body, I would never shut up. It’s not just the pain, but the weakness it collects. Even right now as I write this from the couch, blankets on my legs and dogs curled up beside me, I’m struggling to hold up the weight of my own head. Often, sitting up feels like I’m briskly walking; walking feels like I’m running; running is unthinkable.

So, I’m adjusting my plans for the future. I’m listening to my body for maybe the first time in my life and being honest about its limits. I’m leaning into the soft life. I’m getting excited about writing more, discovering low-impact artistic pursuits, and creating the comfiest, most peaceful home possible. I’m grateful to have a patient and loving partner, amazing friends, sweet dogs and legal weed. I’ve found ways to fight the fascist shitheads from bed (more on that soon). I’m focused on securing stability even though so far, it’s been incredibly hard to grasp.

Every day I wake up and take stock of my body. Every day I’m disappointed. This, too, has become normal, which is freeing in its own sick way. The only way I know how to be.