That’s me, uncomfortable and giddy.

Post-op peace

Amy J. Ko

--

In the puritanical United States, we don’t really talk about our genitals. While I generally think this is to our detriment, there is such a thing as too much information, and everyone deserves some privacy. But as a trans person in a transphobic world, especially a world particularly obsessed with trans people’s genitals, there’s a different calculus at play. If I keep information about my genitals private, I can reinforce the fact that no one has a right to know what’s in someone’s pants, including mine. That’s an important line to draw in a society that seems to define trans people by the shape of their bodies. At the same time, there is a price to keeping my experiences private—I’m in a position to make trans stories more visible, which can help make change, and I feel a responsibility to do that when I can. Trans people also need their stories told to dismantle the culture of silence that has led to so much isolation and shame. So here’s the deal: if you don’t want to read about my genitals and experiences with sex reassignment surgery, then don’t; you can draw that line yourself and go read something else. However, if you feel like hearing my story might help you be a bit more conscious and humble about the assumptions you make about trans people—or you’re trans or non-binary and curious about my experiences with surgery—read on.

Since adolescence, I’ve quite disliked many aspects of my adult body. For all but the last few years, it’s felt lanky, flat, and long. It’s always seemed to be all the wrong shapes and sizes, never quite seeming right in the mirror. I wasn’t born in the wrong body—most of my body is just fine—there are just parts of it that don’t quite fit my mental image of who I am.

This was always particularly true of everything around my groin, which just seemed like a disorganized, ugly, useless mess of flesh. I remember some of my first memories noticing everything that hung from it: I was repulsed, and often tried to push everything back in as a child, hiding it in my underwear and trying to make everything flat. I came to think of it like a birth mark or a skin tag: unsightly, and something I’d happily live without, but also something I couldn’t really change. Over time, though, I came to think of it more like a tumor, because it wasn’t just some passive, ignorable part of my body: the strange dangling masses demanded attention that I didn’t want to give them, and produced a hormonal poison that changed my body in ways that made me unrecognizable.

In high school, my tumor made romantic relationships fraught. I found my tumor disgusting, and I always imagined that others would too, and so I avoided relationships—and any other activities that might reveal my ghastly sarcoma, like being in a locker room or swimming. I organized much of my life around ensuring that no one, not even me, would have to encounter my gentalia.

That worked for a while, but I eventually fell in love, and she was interested my tumor. I liked her, but I was secretly ashamed, but I pretended to be confident so I wouldn’t look foolish, and shared it with her. It was over quickly, or at least what seemed quickly; I couldn’t tell, because I had dissociated so much from my body in that first sexual encounter that I felt like I was just sitting in a chair in the same room, watching my body be controlled like a puppet. I didn’t enjoy the act, but I did enjoy the intimacy. I felt conflicted, ashamed, and a bit used.

I found some workarounds. For example, loving other people’s bodies turned out to be much more fun than loving my own. Partners would always worry that I’d only give and never receive, wondering why I was so generous. Of course, it wasn’t that I didn’t want to receive, it’s just that I couldn’t. The moment my obscene growth received any attention, it would hide in shame, as it should have. I eventually found ways to dissociate at will by just pretending to be someone else so I could give my partners pleasure. Pretending was worth it because there was always cuddling after. And when my tumor demanded attention from me, and I found ways to satisfy it quickly by giving in to my imagination, seeing myself differently, with a different body, getting a different kind of attention. Afterwards, I would feel relief, but also shame.

Jobie comes out to her MySpace boyfriend while the audience jeers.

Throughout the 90’s, I’d heard of “sex changes” on daytime talk shows like Jerry Springer and Maury Povich. The rules seemed to be pretty clear: an apparently slutty woman would come out on stage, and the audience would boo her, then her boyfriend would come on stage. She’d say that she had a secret, and he’d get a look of concern. She’d share that she was assigned male at birth, and the audience would jeer at her for being deceitful and fake, then celebrate the host for bringing the drama. Sometimes she was strong, yelling back at the audience; other times, she crumbled; most often, she was stoic, having long braced for ridicule.

TGStorytime, an archive of trans fiction that helped me imagine a different life.

I didn’t want to be on Springer, I didn’t want my tumor, and I didn’t want a boyfriend. What I wanted was to be a woman, and to love women. I eventually stumbled upon websites that told different stories. Some of them talked about men who became women through magic; in other cases it was technology. In some cases, they cross dressed as women, but still saw themselves as men. Sometimes bodies would change, sometimes minds would change, sometimes entire worlds would change, with characters being seen as if they always had been women. Most of the stories were terrible—no better than daytime talk shows and bimbo stereotypes—but some of them where deeply considered short stories that showed me ways that life might actually be for someone whose body seemed to have the wrong parts. I kept reading, kept fantasizing, and kept compartmentalizing.

Eventually, I found some peace and unity. A therapist, some hormones, and coming out fixed a lot. It turned out that my little gender puzzle wasn’t so complicated. With the right medication, a name and pronouns that made me happy instead of sad, some clothing I actually liked, being seen as a woman, and hormonally muting my growth’s constant demands for attention, fixed nearly everything. A year after coming out, I was feeling pretty great, despite a global pandemic and a racist, transphobic world keeping the bruises fresh. I finally understood what it felt like to not be thinking about my gender every moment of every day, and it was freeing.

But the tumor remained. I tried telling myself that it didn’t matter; there are many things that make a woman, and none of them are essential. I was surrounded by affirming people who made lots of room for gender diverse bodies. There wasn’t a single moment in my progressive Seattle bubble where I felt pressure to deal with the tumor in any way. Pamphlets and therapists and communities would repeat the refrain: there is no right way to transition; not everyone has or wants surgery. I felt a generous space of possibilities, I had room to explore what I wanted, and I had time to decide, and freedom to not decide at all.

And yet, those feelings of scabrous disgust persisted. I still couldn’t look at myself in the mirror naked without feeling deeply dysphoric. I couldn’t wear what I wanted because clothing didn’t fit. I was still disinterested in giving or receiving attention to my tumor, because of the way it made me dissociate from myself. After thirty years trying to find myself, and finally succeeding, having this unwanted lump constantly pull me out of myself became an even greater source of dysphoria than it had been before.

Last year I decided to do something about it. The toxic portrayals of “sex changes” in the 1990’s had been replaced with an abundance of credible medical resources about gender confirmation surgery/sex reassignment surgery. By 2010, bottom surgery was no longer something rare, dangerous, and stigmatized, but something that was increasingly available, safe, and even covered by insurance. Suddenly all of those unrealistic fantasies that kept me from losing myself entirely seemed quite realistic.

Realistic, but far from easy. The requirements, largely set by the WPATH guidelines for transgender health, seemed designed to deter me at every point:

  • Live as a woman for a year. That wasn’t hard to do in principle, but waiting a year to even schedule a surgery that was often booked out a year or more seemed cruel. I’d spent 30 years thinking about this; was that not enough time?
  • Find two therapists who would affirm my need for surgery. I already had one and she had no problem offering a letter; but finding a second required contacting dozens of therapists and months of phone calls. I finally found one that specialized in minimizing gatekeeping, only requiring a single appointment to get a second letter, rather than having to establish a redundant therapeutic relationship.
  • Find a doctor who would affirm that I’d been on hormones for a year. My doctor had written countless letters like this, but I was lucky: most doctors have never written such letters. But requiring hormones for a year seemed awfully arbitrary.
  • Complete 60+ hours of painful genital hair removal. Every three weeks for a year I met my electrologist for two hours, where she meticulously inserted a needle into several hundred hair follicles on my penis, scrotum, and perineum, electrocuted them (sometimes twice) and then tweezed them. It was the most painful treatment I’ve ever had; I often came home (and sometimes to work) exhausted, wincing. This was all on top of laser and electrolysis to remove facial hair.
  • Find at least 4 weeks away from work. As a professor who makes commitments sometimes 2–3 years out, finding a month off is nearly impossible, because it requires planning that month a year or more in advance. I only got my August 24th, 2021 surgery date in February, and so I spent most of Spring and Summer working extra hours, breaking promises, and finding people to take over my responsibilities to carve out about 5 weeks away from work and a quarter off from teaching.
  • Find someone willing to be a 24/7 caregiver for 2 weeks. I wanted my wife to be my caregiver, but that required a multi-month FMLA approval process (which, among many other things, required multiple denials by an outsourced FMLA management company because they’d assumed that my wife and I weren’t married because the name change addendum on our California marriage license is on page 2). It took 5 months to get approval.
  • Save up $25,000 USD for surgery. I didn’t know how much it would cost, and insurance, the surgeon, and the hospital couldn’t tell me. This was the cost that most people paid in the U.S.; I was hopeful that I would just pay my out of pocket maximum with Kaiser. This took me two years to save.
  • Save $5,000 USD for 2 weeks of hotel, food, and supplies for recovery. My surgery was out of town in Spokane, Washington, and I so I needed to reserve lodging for 2.5 weeks to be able to go to the mandatory pre and post-op appointments with the surgeon’s office.
  • Go off hormones for 3 weeks before and after surgery. This was my worst nightmare; hormones had made my gender situation bearable and made me feel like myself. And stopping them meant menopausal symptoms like constant headaches, fatigue, hot flashes, and interrupted sleep, not to mention a return of hormonal dysphoria.

Any one of those can be challenging. Some people don’t pass and face a year of name calling and abuse. Some people live in places without therapists who have any expertise with gender. Some people live in places with doctors who refuse to prescribe hormones. One minute of genital electrolysis was enough to make me question my plans. And who can take a month off work, and has friends or family who can take off two weeks from work? And the financial barriers are obvious.

But I am a person with significant privilege. Seattle has an abundance of gender health expertise, and I have enough money and health insurance as professor to make surgery within reach. FMLA, plus Washington State’s Paid Leave supplements made it possible for my wife to be my caregiver and get paid. And the flexibility of my job meant that I found time throughout the past year to be painfully stabbed, zapped, and tweezed for 2 hours every few weeks. It wasn’t easy, but it could have been so much harder—and is, for nearly every other trans person who decides they want surgery.

Of course, last year was last year. As I approached my surgery date of August 24th, 2021, there were numerous other barriers that had nothing to do with trans health gatekeeping and America’s broken and fragmented health care system:

  • COVID-19’s delta variant surged around the U.S., and I needed a negative COVID test less than 7 days before surgery. I had to quarantine for 3 weeks. I made one exception: a final electrolysis appointment. But surprise! My electrologist wrote me the day after that she’d tested positive, and so I had a stressful 5 day period of waiting to see if I was positive too, and would have to cancel surgery. (Fortunately, I wasn’t: masks, ventilation, and vaccines work).
  • Seattle had record heatwaves in the month prior to surgery, reducing our home to a single air-conditioned den. Hot flashes and night sweats in a heatwave are not fun.
  • A friend and colleague died of heart failure in the weeks before surgery, and I spent several weeks grieving and dealing with various work crises created by his passing.
  • Record wildfires blanketed Seattle in smoke, making it impossible to go outside, and severely triggering my asthma. My surgery was in Spokane 5 hours east, where fires ranged even stronger, and the air quality was often 150+.
  • My wife ended up having to go to care for family, leaving me home alone for the week before surgery. I also had to fall back to my mother as my caregiver.
  • I was co-chairing the ACM ICER 2021 conference the week before surgery. As fun and rewarding as it was to help bring our community together for a second time virtually, it wasn’t really a great time to be in charge of my community’s major research conference!
  • The delta variant was surging throughout the country in the week prior, leading many hospitals to cancel elective surgeries such as mine. My date could be moved at any time because of vaccine and mask refusal abundant in rural and red eastern Washington.

Every day I felt more isolated, more exhausted, and more skeptical that surgery would happen. Time crawled, with the last week feeling like months. And at the same time, my anticipation of gender joy grew as I began to accept that it might actually happen. I finished my last day of work on Friday, August 20th, spent all day Saturday packing for Spokane, preparing to leave the house for 2.5 weeks, dealing with logistics with my cat sitter (my father) and my mother, and trying to support my wife as she dealt with her own family caregiving burdens.

Road trip with mom!

My mom and I left Sunday morning for Spokane. I worried about the fires in Spokane and being able to breathe. But the smoke drafted east, the fires were contained, and we made the drive mostly without event. We tried to get takeout at a popular cafe in Moses Lake, but inside where a hundred people, all unmasked, most probably unvaccinated. And few other places in the small town did take out. We eventually found a Mexican place that did, but a defect in the Toast website led to double order for lunch. And so I had two tasty tortas instead of one. Driving into rural Washington felt like leaving the safety of vaccines and sea air, and entering a crucible of maskless, unvaccinated, conservative hoards, undeterred by global warming and public health.

Monday was a pre-op appointment and prep. I met with my surgeon’s physican’s assistant and went over what the next two weeks would bring, and the various risks. I was nervous and she reassured me that the surgeon had done the procedure more than 800 times, and gave me the exact number of cases he’d had for each complication, how each was dealt with, and most reassuringly, that every single patient with a complication eventually healed fine. She talked through what would happen at the hospital, and what would happen after with respect to pain and recovery.

I spent the rest of the day preparing for the next day’s surgery with my mom. Arranging our Airbnb and getting groceries was easy enough; the hard part was establishing a caregiving relationship with my mom. She had always been a strong material caregiver, but not an emotional one, and I needed both. In fact, much of our relationship had been defined by me giving emotional care to her, as she weathered divorce and other traumas throughout my childhood. We had some hard conversations about boundaries, expectations, and also gender. These conversations left me feeling anxious but hopeful about the coming weeks, where I’d be recovering from surgery, trying to maintain some emotional stability, but also having to work on my fragile relationship with my mom.

The night before, however, my wife was able to fly to Spokane to support me for the day of surgery and the day after. This changed everything for me emotionally. We woke up the next morning, embraced after having not seen each other for weeks, and went to the hospital. Every step was clear and transparent: they verified insurance approval, they had me disinfect my entire body and get into a gown, I met with the surgeon, the anesthetist, the head operating room nurse. They eventually wheeled me into the operating room, administered anesthesia, and my last thought was, “everyone is so nice, professional, and caring; I’m in good hands.

My lovely wife!

My next thought was “Where am I?” I was in the recovery room, and a nurse was helping me waking up from anesthesia. My wife joined my side, and I kissed her, and I (think I) said, “I did it! It’s gone!”

The rest of Tuesday’s recovery brought other milestones. I had moderate but well managed pain. I had an annoying catheter, which I spitefully named Cathy, and described as my clingy soon to be ex. I had two little drains that sucked out various flesh and blood from the surgical site and I needed to strip and empty it twice a day. And I also had a restrictive cast-like diaper made of tape and gauze surrounding my entire groin, which hid and protected my reconfigured anatomy, which itself was packed full of gauze. This was my cage for a week.

But beyond the physical healing, as I emerged from anesthesia more alert, there was also a slow realization of just how heavy the weight of my tumor had been. It felt like my mind had been carrying a 100 pound boulder for decades and the surgeon had, in just a few hours, helped me set it down. My psyche was tired from bracing, and would be for a few months as it recovered, but it would never have to carry that boulder again. As the anesthesia wore off more, I had a good cry with my wife and shared how much lighter and brighter everything seemed. I beamed endlessly, and savored every moment I could look down at the dressings and tubes coming out of my groin as I imagined what might be inside, and what wasn’t.

I was supposed to be discharged the day of the surgery. In fact, it turned out that the only reason my surgery hadn’t been canceled was because it was considered a 1-day outpatient surgery—the hospital had canceled all other elective in-patient surgeries due to the delta surge. I hadn’t realized how close I was to having to reschedule, get approval again, find another month off, redo FMLA, etc. It motivated the nurses to get me on my feet and out of the hospital.

That turned out to be a bad idea. When I stood up at 10pm later that night to get into the wheelchair and go to my Airbnb, I feinted hard. My blood pressure had dropped to 50/30, and the nurse made the split second to get me back into bed and stay the night. I remember resurfacing with two nurses monitoring me, checking my hydration, and administering other emergency measures to get my blood pressure up. My wife stood by, keeping me awake, and crying. I felt grateful to be laying down, and to have so many people trying to keep me alive, but my face was grey and bloodless. I fell asleep and didn’t wake up until they came to take my vitals again 7 hours later.

I eventually made it to the Airbnb in downtown Spokane and settled in. I said goodbye to my wife, who needed to return to caring for her mother in California. Recovery Wednesday through Sunday was an exercise in monotony: sleep, empty catheter, nap, empty drains, take pain relievers, eat, take pain relievers, nap, take pain relievers, eat, take pain relievers, sleep, repeat. Every day I had a bit more energy to write friends and family brief notes, to play a game, to watch a movie. My life was mostly laying down, and occasionally waddling to the bathroom or standing to eat. There was absolutely no sitting on my traumatized perineum, so driving anywhere was out of the question; there were also 20 steps to contend with to get outside and a wall of toxic smoke, so I sheltered for a week. Throughout, my mom was constant caregiver to my physical healing, making food, doing dishes, doing laundry, retrieving items, checking my temperature, helping with drains and medications. It felt nice—and necessary—to be cared for after more than 30 years of feeling like I’d needed to care for others.

By the 1-week post-op appointment on the following Monday, I was ready to be free of the drains, catheter, tape, and gauze. Not only did they rule my body and movements, and cause a lot of pain, but they also kept me from seeing my new body. What had become of my tumor? Was it now the beautiful vulva and vagina of my dreams, albeit bloody and swollen? Would I be able to pee? I checked in to my appointment at the surgeon’s office, and found a whole team ready to free me from my sanitary prison. They removed the tape wrapped around my front and back; they clipped and removed the sutures holding in my drains and catheter, then removed the tubes. They then worked on removing what seemed like 40 feet of bloody gauze from my new vagina. After a week of pressure, pain, and discomfort, I finally felt free.

Then they handed me a mirror. What I saw, as swollen as it was, was beautiful and mine and right, and I cried. The providers and assistants watched me break down as I mumbled thank you over and over, half naked in stirrups with my swollen genitalia exposed for all to examine. When I recovered, the surgeon’s assistant gave me a tour of my new anatomy, talked about what was swollen and how things would look when it subsided. She then taught me how to dilate, which is necessary for about 2 hours a day to ensure that the new canal wouldn’t close while healing over the next year. The surgeon then dropped by to look for complications, found none, and that was it: I dressed, walked out of the office without waddling or wincing, a woman much happier with what was between her legs.

As I walked to the car where my mom was waiting. Spokane was sunny and clear, there was a light breeze, and I paused, closed my eyes, and tried to remember what it was like to have my tumor taking up space, demanding attention, causing me physical and psychic pain. Despite a lifetime of it hanging around without my permission, I’d already forgotten. Everything down there in my skirt was now something that I’d chosen, that was mine, and that was right. I felt a perfect peace.

Freedom!

The next two weeks of recovery were slow and painful. I wasn’t able to pee after getting my catheter out, and so I had it for another 8 days to reduce swelling further. I had to ice 20 out of every 40 waking minutes to ensure reduced swelling. I had terrible constipation from narcotics and anesthesia, putting strain on my sutures and leading to significant bleeding. While much of my new bits were numb from swelling, some of them were hypersensitive and quite painful with every movement. My urethra seemed to bleed a pint of blood every time I cleaned by vagina, and so I was weak, anemic, and tired of holding layers of gauze against my poor urethra for an hour while it clotted, over, and over. My perineum tore from the pressure of dilation, leaving a wound upon which I needed to painfully dilate three times a day, meaning hours of pain and another wound to heal. And all day and night, bloody discharge flowed from my groin. These are not the same physiologically as menstruation and childbirth but they are very much the same anatomically and experientially: bleeding, pain, cramps, hormonal changes, and all of the postpartum recovery gear to go with it. The only thing missing was a baby.

But things got easier, one day at a time, to the point where I had a few moments each day to write friends, capture my thoughts here, and even through a virtual birthday party for my daughter’s 20th birthday. At the time of writing this, about 3 weeks post-op, I’m far from healed physically, but emotionally, I’ve never been better: what’s between my legs will never again be a source of pain, trauma, and shame. In might actually, for the first, time, be a source of pride and joy.

Not every trans person needs to go through this, nor do those who do go through the same thing. There are many different types of procedures, all with their own tradeoffs and recovery challenges; some have fewer or more complications, including those requiring further surgery. And many who might dream of one of these surgeries will likely never have access because of poverty, social, or legal barriers. Some trans people experience no dysphoria at all from their genitalia, and have no interest in surgery.

But in my case, this surgery was very much necessary to my mental health and wellbeing. That little part of my brain that was constantly chattering about my genitals, no, no, no, is finally silent. And in a year, when everything is healed, it might start chattering, yes, yes, yes.

--

--

Amy J. Ko

Professor, University of Washington iSchool (she/her). Code, learning, design, justice. Trans, queer, parent, and lover of learning.