feature by sarah
I did a whole lot of doctor shopping during my late 20s and early 30s. What I needed was to have my uterus, ovaries and all the related bits taken out — a hysterectomy and a bilateral oophorectomy.
The doctors knew I was going to have a very hard time getting pregnant anyway, but that didn’t matter. I told them, almost defensively, that I’d always very much wanted to someday be pregnant, but that didn’t matter either. It didn’t matter that it would be dangerous for me to even get pregnant. It didn’t matter that I wanted to adopt children with a future partner. It didn’t matter that my reproductive rights were and are my own. It didn’t even fucking matter that their refusal was likely going to kill me.
“I’m simply not going to sterilize a young woman in her 30s. No one will,” one of the many gynecologists I visited told me.
I didn’t have the chance to explain anything to that doctor, or any other. Her knee-jerk response to operating on someone my age, a potential breeder, was as far as the appointment went. She handed me what must have been my fifteenth copy of the brochure for a Mirena IUD, which, once again, I had not gotten the chance to tell her was not an option for me.
A previous gynecologist had spent several minutes drawing a diagram of the ovaries, fallopian tubes and the uterus with the Mirena in it., explaining what it would do and how it would likely stop my periods and reduce my relatively high risk of endometrial cancer. When I asked if she was presenting this as an alternative to the hysterectomy I had requested, she said, “Well, no, because a hysterectomy is not going to happen.” She was the harshest of all the doctors, and I’d expected the best outcome from her, the one I’d clocked as queer. I left her office as I’d left so many others: my glasses sticky and fogged with tears, another Mirena brochure clenched tightly in my fist.
I often wondered if I’d been more feminine, if I hadn’t sported a haircut that I get at the local hipster barbershop by pulling up images on my phone of Ellen Degeneres, if I’d been thin, and maybe with a less obviously unChristian surname in some of these doctors’ offices, and above all, if I had been accompanied by a boyfriend or husband — would they have listened?
When I was sixteen years old, I went mad in the mint green halls of a mental hospital for adolescents in Queens, New York. I was put on all kinds of antidepressants and antipsychotics and mood stabilizers. In a seven-month onslaught of callous polypharmacy, the prescriptions shuffled into and out of sight like cards in a magic trick by the invisible psychiatrist behind the frosted glass door. It was a very bad place, but this part of my story isn’t really about that.
The medications unmade my mind. They made me scream with such raw despair and rage that I lost my voice for days, over and over. At one point, I vaguely remember trying to open the flesh of my arm to repair the motherboard I was certain was damaged inside. Some of the medications made it so difficult to move I could not sit up without help. Sometimes I talked to a spider who lived in the ceiling of the mattress-lined quiet room where I was put when an SSRI tipped me over into a particularly agitated state. Whenever that happened, the medication would, of course, be swapped out for a new one.
I was deeply depressed when I went into the psychiatric ward, and I was a mad person within two weeks of arriving there. What allowed me to finally go home was refusing to open my mouth and swallow the pills in the little paper cup the nurse in the infirmary tried to hand me. There was withdrawal, but within a couple weeks I transformed from a screaming, whirling cactus of a girl back to a swaddled-in-blankets, severely-depressed girl.
And then I was able to go home and resume high school, after seven months in a place so terrible, so barren, so abusive, that twenty years later, it still permeates everything about me and my life. One Flew Over the Cuckoo’s Nest is — and I’m serious here — a fairly accurate portrayal of the hospital I stayed in, except, of course, the hospital I stayed in was for children.
Why was I depressed before I went into the hospital? Good question. It was the birth control pills a pediatric endocrinologist had prescribed for me two months earlier, to treat a hormonal condition that runs in my family called polycystic ovary syndrome (PCOS), which is its own vortex of problems, and in my case, was severe. I didn’t understand that the birth control was the genesis of my acute depression until a full decade later, after I had tried another dozen types of birth control pills (and patches, and rings) for hormone regulation (and contraception, as far as the doctors knew, because outing myself never even crossed my mind), and each prescription had laid me out in a depression that made the prospect of death seem like a gasp of sweet, life-saving air.
Each time, I told whichever doctor was pushing hormones at me about my previous bad experiences, and each time, they said something along the lines of “Oh, this one is low-dose, it should be fine.” They never were. The only saving grace when things went bad with these iterations on that first hormone-regulation attempt at age sixteen is that I had gained some small amount of maturity and self-insight in the intervening decade. I was able to learn from the past, to grab onto a handhold — which was often my own sallow, broken-out reflection in the mirror — and save myself by tossing the meds out sooner and sooner each time.
Which, I suppose, is what I did when I was sixteen, too. When I started refusing all the pills the nurse tried to hand me in the psychiatric ward, I inadvertently refused the birth control pill that was in the little paper cup with them. And that’s what lifted the depression and saved my life, more than anything else. It isn’t because anyone listened to me, nor is it because I knew how to listen to myself. It was an accident.
The problem was not just the birth control, though. I continued to plunge into terrible mental states on a semi-regular basis even after I returned to high school, and throughout college and graduate school and into my twenties and thirties.
This is why: I had premenstrual dysphoric disorder (PMDD), which is PMS but much more severe. Hear me out — for me, it caused screaming rages that left me feeling like I had been possessed, depression so severe that at times, I could not move because the despair would come in a rush if I so much as opened my eyes, and as the years went on and the illness worsened, there were suicide attempts in the days before my periods. That, plus endometriosis-induced pain I would rank as an eight on the pain scale. Excruciating, cannot-watch-television-or-eat-or-sleep-or-think cramps. Migraines. Vomiting.
By the time I hit my late twenties, I had eaten through all the goodwill that wascame prepackaged with my privilege and education. Because of the dire moods and altered thinking that came and went, I’d burned so many bridges I was afraid to make any new connections. I was afraid to try anything new, or get to know anyone, or move forward with my life. I didn’t apply for jobs, I stopped publishing my writing in journals. For a few years, I stopped writing altogether. I no longer felt like what I had to say was consistent from week to week, so how could I put it into print? I was alone in the Pacific Northwest, jobless and sick.
I was diagnosed with bipolar disorder at age 25 because of the cyclical nature of my depression and agitation, and put on heavy doses of mood stabilizers and antipsychotics. They didn’t work.
In my late twenties, feeling no control over my life and my health, I decided to start tracking my moods, hoping maybe some hard data would help me get a better grip on myself. I didn’t really know what I was looking for. I rated my level of depression so that a higher number meant a worse day. For six months I did this.
One day, perhaps because a tampon commercial was on TV while I was working on my spreadsheet, who knows, it occurred to me to enter my menstruation dates in the spreadsheet, too. I already had those dates because if I went too long without a period I was supposed to fill a prescription for a progesterone vaginal insert to induce a period — otherwise the endometrial lining could become precancerous… or something. I don’t know.
The results were astounding. Even though my menstrual cycle was wildly irregular, my agitated, depressive episodes matched it precisely. My moods started worsening a week or two before my period, spiked two or three days before, and then abruptly returned to normal the day I bled.
I read everything I could find about it.
This was the first time in two decades I didn’t feel like a fuckup.
I went to see my psychiatrist. I brought the spreadsheets. She looked at them for a minute, and then gazed at me thoughtfully, one leg crossed over the other, leaning forward. I averted my eyes. Portland’s beautiful, overcast downtown was shining damply behind her in the office window. “Why were you diagnosed with bipolar disorder?” she asked. I had been diagnosed years before I met her, on the other side of the country.
“I think it was partially because mood disorders run in my family, and because I get depressed periodically,” and here I gestured at the graphs. “And because I hallucinate and talk so rapidly when I take SSRIs and triptans and medicines like that. The mania.” Triptans are pills for migraines, and like antidepressants, they are serotonergic; they increase amounts of serotonin available in the brain. My psychiatrist knew about my sensitivities.
“Have you ever had a manic episode arise out of nowhere, without taking a medication first?”
I thought about it; I scoured the past two decades of my life, trying to recall such an instance. No; there had never been a single manic episode that had happened organically. Just like that, the gloomy world cracked open and sunshine rushed in. I took a long, wavering breath in, and shook my head.
The psychiatrist removed my bipolar disorder diagnosis, and told me that she suspected I was particularly sensitive to the side effects of serotonergic medications. We talked for a long time that day, and in many follow-up appointments. What I’d had were, in all likelihood, not manic episodes at all, but some combination of delirium and severe anxiety and in some documented instances, serotonin syndrome.
She confirmed that I had PMDD. I read everything I could about it. There was very little information outside of desperate internet forums.
PMDD symptoms tend to begin after ovulation, and continue to worsen until the bleeding begins. In my case, my symptoms would let up very quickly after the start of my period. The main treatments for PMDD are antidepressants and birth control pills. Obviously, I ruled those out. I had tried every single other option available, and was running out of time, or at least that was how it felt when the dust settled after a particularly bad episode during which I had come up with a detailed suicide plan and then had gotten too baked on some cannabutter cookies to follow through.
But as I’ve already indicated, the story didn’t end there. Discovering I had PMDD was not the winning of the battle. It was followed by years of male doctors telling me the disorder did not exist, or in which they saw “bipolar disorder” in my chart and blamed my symptoms on that, the circular logic so insurmountable to me that I wanted to grab them by the lapels of their white coats. I wanted, truly, to hurt them. But that wouldn’t have gotten me anywhere, and besides, they had already left the exam room.
Other doctors believed me, and they pushed me to take more oral birth control pills or antidepressants or mood stabilizers or any other number of other common treatments for PMDD, and I did my best to explain that I had tried them and they had made my problems so much worse, my situation so much more precarious. There was never enough time, never enough space in these appointments for me or my story.
I’ve needed to figure out so many things about my own about my identity — but maybe the PMDD should not have been one of them.
The PMDD was why I was on my own, having destroyed so many relationships with loved ones, with professors and professional contacts, having quit or gotten fired from any number of jobs during episodes, having spent several years accepting the physical and emotional abuse of a girlfriend-then-wife (and then ex-wife) because it seemed at the time to be exactly what life was about, and only just barely staying alive, curling up in corners of lonely, unclean rooms in shaking fits of sadness too raw to keep inside my head, screaming into my bent knees.
The doctors never heard my story about how I was so sensitive to oral contraceptives and SSRIs, not even the one who finally agreed to do the surgery.
I had seen enough doctors by the time I found him that I’d more or less stopped trying. I ha’d come to understand that they had total power over whether I had a future. I didn’t think I could tolerate another round of being ignored and degraded. But he came highly recommended by a high school friend of my mother’s who had also ended up in Portland, and my mother called me to ask whether I had made an appointment so many times that appeasing her finally outweighed my fears.
His office was in a hospital. I went on a very hot summer day, and when the main entrance doors slid open, the blast of air from inside made me instantly cooler. The open doors of a chapel dominated the hospital lobby. Inside the chapel, impossible to miss from the entrance, was a glowing, 12-foot stained glass Jesus on the cross. I stopped cold. “Excuse me,” said an elderly man, behind me, pushing his wife in a wheelchair. Here I was, Jewish and gay, — both things I’ve been attacked for — and yes, I mean that I’ve been physically assaulted for those things in this decade, and in the United States. And now I found myself walking into a Christian hospital, to request a hysterectomy.
The floor was carpeted, which seemed strange for a hospital.
I had my spreadsheets, I had my list of symptoms, and as soon as I walked into that hospital lobby, I had at least ninety-five heartbeats per minute and zero expectations for the appointment.
The doctor was very tall and had white hair. He was a matter-of-fact man who, unsurprisingly, didn’t have much time for me. He interrupted me repeatedly, impatient as I worked through my recitation of why I needed and deserved a hysterectomy. He cut me off again. “Why exactly do you think you need your uterus and ovaries removed?”
Frustrated, I said it plainly. “I have PMDD. I have really severe physical and depressive symptoms at the end of each menstrual cycle. I’ve tried—“ He cut me off again, to say that surgery was an extreme measure. I was floating somewhere in the hospital lobby, high above the stained glass. I showed him the spreadsheets. I think something about what I’d been saying was more plausible to him when he looked at it in writing. He shuffled through the months of graphs, nodding. On paper, he could see that I was fine, respectable, at least half the time. He let me talk a little bit more. When I mentioned that I planned to adopt with a future “spouse,” especially because a few genetic diseases run in my family, he turned on his stool and looked directly at me for the first time since he’d come into the exam room.
“Well, that’s very altruistic of you,” he said. “Very noble.”
I guess I passed his morality test because he scheduled the surgery.
He performed the surgery using a robot called DaVinci that made minute movements much smaller than the ones a surgeon could do with their own hands. I found out only after the surgery that he had placed my feet in stirrups and pulled my organs out through my vagina, like a delivery, my legs paralyzed, everyone in the operating room able to see. A week afterward at the post-op exam, he told me that the pathology lab had found a particularly dangerous precancerous cyst on my left ovary and it was a lucky thing I had gotten the surgery when I did. Then he retired.
My doctor had not prepared me for the realities of surgical menopause, in which my body reacted poorly to the abrupt change in hormone levels. It took a year before things evened out. I had physical symptoms ranging from hot flashes and insomnia to freaking lactation — which was just nature being cruel. But worst of all was the clanging echo of depression in my cavernous mind. I remember using the word “husk” frequently to describe myself.
Someone trusted, queer, and relatively new in my life recommended a gynecologist who treated a lot of trans patients. Queer friendly, and well-versed in hormones. I went to see her, and she was indeed amazing. One day I made an appointment to touch base because we had been trying estrogen injections, but we couldn’t get the dose right. I knew my depression was the kind that came from a hormone imbalance, like the PMDD, not from any otherthe other things that cause of depressive episodes in the majority of people (including myself, a few times). The difference was a kind of agitation, and it was easily recognizable to me after two decades.
I frantically tried to convince her that what I was feeling was hormone-related, tears running down my face. I was speaking as quickly as I could, and then her hands were firmly on my shoulders. I think she shook me a little. “Rebecca!” she said. “I believe you. I believe you. Okay? I believe that the hormones are doing this.”
I hiccuped and sniffled for a minute, trying to understand. I tried to rewind the past few minutes, but it was already distorted in my mind. “I’m just saying I don’t know exactly how to fix it,” she said. “I’m just saying I don’t know. But I believe you.”
I’ll never forget it. I was so traumatized by doctors that whether or not any doctor was terrible, I went in to every appointment ready to be dismantled, whether or not the doctor was terrible.
I was startled to hear a doctor say “I don’t know.”
My dream girlfriend and I are buying a house together next year. I’m writing again. And, despite a difficult-to-explain résumé gap, I’m plotting. I want a career that allows me to write and advocate on behalf of and amplify the voices of the most marginalized patients, and while I’m at it, get in the face of the medical establishment, and teach them how to fucking listen. I don’t know if my girlfriend and I will ever be parents, but we are happy, and for the first time as an adult, I am looking ahead. What the doctors never seemed to understand is that I am a whole person with an entire life, and the surgery gave me the chance to make my own future.
When I woke up in the maternity ward after my hysterectomy — finally, womb-less — my room was among others occupied by new parents with crying babies and balloons. When I was discharged from the hospital the next day, the only way out was past the newborn nursery, so as they wheeled me past it, my mom and sister warned me so I could duck my head and cover my ears. For months, the sight of a pregnant person or an infant would make me cry instantly and uncontrollably. On the way out of the hospital, through the lobby, we passed the chapel, but I didn’t turn to look; I’d had more than enough of backlit Jesus. 
edited by Heather Hogan.
My own experience of hysterectomy was very different, but in my online hysterectomy support group, I saw so, so many women dealing with all or some of the aspects of this. It’s heartbreaking and infuriating. Thank you so much for sharing your story.
(p.s. tried to follow you on Twitter, but the handle isn’t coming up. :-/ )
Thank you for writing this. Sometimes my friends look sideways at me when I complain that the Medical Industry (TM) doesn’t give a fuck about the health concerns of people who COULD carry babies inside of them, but this is a perfect example.
I also have PMDD, which is also self-diagnosed after years of tracking and therapy and endless fruitless medications. But what does it say about the healthcare industry that they only have SSRIs or birth control to fix it? And that it’s more important to them that you could potentially reproduce? I don’t know how many times I’ve said something along the lines of “it won’t do me any good to reproduce if I’m already dead.”
You are brave for continuing to seek out and advocate for your own treatment. If they won’t do it for us, we will do it for ourselves.
Thanks for what you said. I’m so sorry you also have PMDD. Yeah, anyone with a uterus, and anyone who isn’t a thin, cis white male is devalued by the medical industrial complex ™ in any number of ways.
My girlfriend and I were talking about how they forcefully sterilize many women of color, which is the opposite end of this particular oppression spectrum.
Keep fighting to get good care, and to be well.
I loved this and I am filled with anger!
I read another essay, a few years ago, by an ostensibly straight woman who had spent nearly twenty years of her life misdiagnosed and extremely overmedicated for her PMDD, and went cold turkey off all her medications because no doctor would listen to her – and on the other side, she found her new diagnosis, that all her chronic pain had disappeared (and so was likely combined side effects from her medication) and that her condition could be well-managed by two days of antianxiety meds a month. I remember wondering – if this poor woman had so much trouble convincing doctors she was right about her symptoms, what would it have been like if she were queer?
I’m glad you received the life-saving treatment that is your right. I’m sorry about the rest.
Rebecca, this is wonderfully written. Thank you.
So much love.
I had the exact same experience, tracking my “moods”, which is a euphemism for compulsive suicidal thoughts that kept me in bed unable to think about anything other than ways to die without too badly affecting people I care about, and then suddenly realising they always hit 2-3 days before my period started.
My own sterilisation journey was wanted, though, and entirely unrelated to hormones or depression, and though the doctors gave me hoops to jump through, belittled me and even laughed in my face, they did ultimately give me what I wanted (complete with condescending comments while I was on the table and in recovery). I can’t say that you wouldn’t possibly have had an easier time if you were a more socially accepted someone else, but doctors were plenty unpleasant with me despite presenting as straight, being married to a man and living in a “north European socialist utopia” free from overbearing conservative Christian morals. There’s a really deep resistance towards female sterilisation, but it’s particularly infuriating in cases like yours, when you have strong medical reasons and they still won’t help you.
OMG PMDD can be the WORST. Mine’s somewhat under control thanks to Implanon, which is surprising because the Pill made me either more depressed or physically ill (like I couldn’t walk). It took me ages to find a doctor that’d take me seriously and would do something about it (there was one doc that was sympathetic but also “I don’t know”, most others were like “that’s just PMS”).
Thank you for this, and I’m so glad you finally got your surgery!
So much here is so familiar…I have PCOS, generalized depression and anxiety, and (I suspect) PMDD, and I’m also very sensitive to medications. Nobody would consider a hysterectomy, nobody listened when I said birth control just made everything worse (especially the bleeding and the mood swings). I was always too young to be sterilized, or too impatient to let the birth control work or just crazy or a making a big deal out of nothing.
When I called one gynecologist to tell her I was having an allergic reaction to the birth control she’d prescribed, I was basically told that’s not a thing. Another doctor gave me the implant and I bled for the next 6 weeks straight and became nearly too anemic to function; when I went back in to get it removed he asked, “Are you sure? You’re so close to the time it starts working, I’d hate for you to wimp out when it could start working next week.” And holy shit, the condescension about not being on birth control if I decided to stop taking it was fierce.
I finally, in my 30s, found a doctor who was willing to actually listen to me; she put me on Aldactone for the PCOS and told me about uterine ablations, which ended up being a great combination for me. I’m not 100% where I want to be, but between my gynecologist and my psychiatrist I finally don’t spend half of each month wanting to die, and that’s a new and amazing thing.
Thank you for sharing your story ♥ It makes me cry every time I read something about how awful the experience is for women in regards to their bodies. When it’s other women, that somehow makes it worse, like they should get it or at least listen better.
I’m glad you finally got what you needed and are still with us, but so sad you had to fight so hard to get there.
Thank you for this. I only found out about PMDD because of queers online. I only recognised it in myself when I started using a period tracker. Now I know to dread Day 17 (it’s tomorrow). I’ve found one mental health nurse who agreed with PMDD. I’m six months on Mirena now, and maybe I’m a little less desperate Day 24 than I used to be, but it’s a subtle question of degrees. When I sought help from GPs, I’d say “I have pre-menstrual symptoms that make me suicidal,” and they’d say “So you’re looking for a reliable method of birth control.” “I don’t need contraception, I need help being alive half the month.” “What I’m hearing is we need to enable you to have heterosex without getting pregnant.”
Thank you so much for writing and sharing this. My symptoms are not as bad as yours (and more centered on the period itself rather than the pre-menstrual part of the cycle) but I’ve recently started seeking help for them and so many things about my life and experiences are falling into place. Like the fact that I “successfully” controlled the physical symptoms for 8 years on the pill, while putting up with emotional side effects that I can’t imagine dealing with again. Reading about the experiences of others helps me arm myself against the inevitable backlash I know will come from providers (I have largely had supportive doctors/nurse practitioners, but I’m still very early in the process of seeking a hysterectomy), and to know I’m not alone when setbacks happen.
This was so hard to read. I had to close the tab yesterday and come back to it today when I’m feeling calmer. But I’m glad your story is out there and I’m so glad you finally got the help you needed.
Much love to you Rebecca and everyone going through this.
I’ve been lucky with SSRIs – they turn down the volume on my PMDD so it’s still there but it’s super quiet and I can deal with it. After twenty years believing I was crazy, I decided to track my worst moods on my period tracker just for convenience, and my jaw dropped when I saw the patterns. My doctor believed me and we worked together to make it better.
I got so lucky. But it took twenty years of suicidal thoughts, unaffordable therapy, destroying friendships and relationships, a psychiatric hospital stay, and not once did a medical professional suggest hormones might have anything to do with it. It makes me so mad that we are not believed. I hope you all find the help you need and deserve, please hang in there xxx
Wow, thank you for sharing your story. It’s beautifully written, heartbreaking, and hopeful. So glad you’re doing better. It’s frightening when doctors don’t listen to you over valid concerns and then when you actually find one who does and levels with you, it’s shocking. The medical community needs to do better. The Hippocratic oath is not black and white.
This is such an incredible, brave story–universal and completely unique. I, too, have felt like doctors never have enough time to hear my story, never seem to believe that I know my body better than they do (even if they’ve just met me two minutes before). The dismissal is comparable to gaslighting; it multiplies the insanity. I, too, have gaps in my history, my resume…
I’m still trying to figure out my story re: mental health, and reading this makes me feel angry but also strong for still working at it and grateful to be in a community with such badass people. I don’t know you, but I’m proud of you.
Hello Dear,
Id like to thank you for sharing your story, Im a medical intern (in Brazil) and a future obgyn. Know that you have touched me deeply. I’ve always tried to have really listen to my patients and now, after your story, its engraved in my core. Please know that the medical education is changing (at least here, and in some places).
Once again, thank you.
Thanks for sharing Rebecca. Love the way you write. My lovely wife has PMDD and we are working through it together. When it comes to hormones only the brave doctors say “yeah I don’t know”.