My Hormones Hate Me
And Other Tales of Endometriosis
I got my first period on Rosh Hashanah when I was 12 years old. Happy New Year to me.
I got out of bed that morning, went to the bathroom, and saw spotting in my underwear. I had been in puberty denial leading up to it, so in the same way I tried to delay shaving my legs and wearing a bra, I put on a fresh pair of underwear, told no one, and went to synagogue with my family, hoping it would just magically disappear.
Of course it didn’t, and after services, I reluctantly told my mom.
“I think I got my period.”
We went into my parents’ bathroom, and she reached under the sink. She held up a maxi pad.
“You’re not going to like this.”
Thank God she’s not one of those mothers who thinks menarche is party-worthy. She was right, of course. From that moment on, I hated my hormones, and they hated me right back.
As the months went by, more and more of my friends started menstruating and I stopped imagining that everyone in the room somehow telepathically knew I had my period each month. The self-consciousness decreased but the physical symptoms did not.
I was no stranger to cramps; I was still seeing my pediatrician when I got prescription-strength ibuprofen for the pain. The flow was heavy and my skin was problematic to say the least. And while no doctor had diagnosed me with it, by the time I was in college, I was pretty certain I had premenstrual dysphoric disorder (PMDD), which is essentially PMS hulking the hell out.
For two or three days before each period, I was miserable. I’d cry over nothing, I’d be mad at everyone and everything, I was paranoid, and I was ultra sensitive. So during my sophomore year of college, my gynecologist put me on the birth control pill.
Yaz was a miracle drug. My six- to seven-day period now lasted a day and a half and was cramp-free. My skin cleared up. Sure, my already uncomfortably large boobs bumped up a cup size, but it was a small price to pay to make the PMDD a mere memory.
And then when I was 23, my fling with Yaz was over. I had a blood clot in my right leg. I was young, I didn’t smoke, I wasn’t overweight, I hadn’t been on a long-distance flight; in other words, I had none of the typical risk factors that predispose someone to deep vein thrombosis. Except that tiny pill that manipulated my hormones all month long.
My pain-free days of short, light periods were over.
Over the years, my periods worsened, both emotionally and physically. Shortly after being diagnosed with the blood clot, I started on an antidepressant, partly to cope with the trauma of being 23 and suddenly on blood thinners and in support stockings and partly to manage the onslaught of PMDD-induced feels that I knew were inevitably headed my way. The drug took the edge off, but I still knew when my period was coming; if I wasn’t road raging extra hard, then I was inconsolably sad. One night, a stray cat, a common sight in my urban neighborhood, reduced me to an hour of tears.
Physically, it was like each month brought a new set of horrors. I was always crampy. Sometimes the pain radiated to my lower back. I couldn’t get enough rest to feel refreshed. Some months I battled nausea, and some months headaches. But everyone’s period sucks, right? I told myself that maybe everyone would have the same problems if they weren’t on birth control.
My best friend once said to me, “It’s like you’re living with a chronic disease.”
Little did we know then that it would turn out she was spot on (pun intended).
In 2009, I fell into a job in textbook publishing. By chance, I found myself editing a college-level text on human sexuality and reproduction.
Admittedly, in editing health content, I’ve found myself self-diagnosing or diagnosing my friends on more than one occasion. But when I read about endometriosis for the first time, I was more than convinced I had figured out what was wrong with me. I wasn’t crazy or simply complaining more than everyone else! There was a name for it!
For those who don’t know, endometriosis is a condition in which tissue that grows inside of the uterus begins to grow outside of it. It’s cumulative, so each month, it gets worse and worse, and the symptoms — which include chronic pelvic pain, heavy bleeding, and painful sex — do too.
Furthering my conviction in my self-diagnosis was the fact that doctors often use the birth control pill to treat it. To me, this explained why Yaz was such a cure-all for me and why since being off of it, my period had steadily worsened. I also learned that because it causes scarring and inflammation, it can cause infertility. I was in no way ready to have kids, but this scared me.
When I asked my gynecologist if she thought I had it, she gave me one of those looks that says, “You’re one of those patients who is too smart for her own good.”
Instead she said, “I doubt it, but it’s possible.”
Then she explained that the only way to definitively diagnose it is with surgery, and since that’s, you know, kind of extreme, we would hold off on doing that until one of two things happened — I found myself having trouble getting pregnant when I was ready, or the pain and bleeding became debilitating and affected my day-to-day life.
In the meantime, she sent me on my way with a new prescription for yet another painkiller.
In January of last year, I got up one morning and went to the bathroom. I was bleeding. Again.
I wasn’t supposed to have my period, but this wasn’t an entirely unusual occurrence. In the several months prior, I had started bleeding in between periods. I estimated this happened around when I was probably ovulating and started calling it my “fucking mini period” or my “stupid faux period.” It was a nuisance, but it was hardly the worst thing I had to deal with when it came to my body.
When I had asked my gynecologist about it a few months prior, she told me we would look into it further if it became a regular thing each month. It didn’t, and I hated calling her secretary, so I just dealt with it.
But on this particular morning in January, I was not only not supposed to be menstruating — by my estimation, I wasn’t supposed to be ovulating either.
And I felt like shit. My stomach felt just weird, so I crawled back into bed next to the guy I had been dating for a month or so and groaned.
He asked what was wrong, and I told him I didn’t feel well. He asked what he could do for me as he rubbed my back. I said there wasn’t anything he could do, feeling frustrated that I was dealing with this yet again. He asked several more times, and I said I was fine.
“Stax, don’t lie to me,” he said, using the nickname he came up with for me.
His concern made me relent, and I asked him to go downstairs and grab my painkillers for me. He brought them up to me, then went back downstairs to make breakfast and told me to stay in bed.
While I did, the weird feeling in my stomach morphed distinctly into pain. I had cramps, yes, but it was more than that. I felt like half a dozen gnarled claws were trying to tear their way out of my torso.
I went back into the bathroom to begin to get ready for the day. I looked in the mirror, and my face was practically gray with purple shadows under my eyes; I looked like a vampire and not in the trendy Edward Cullen way. And as I stood to brush my teeth, I began to feel dizzy and nauseous.
Now, I have a pretty high pain tolerance. Blessed with impressively crooked teeth, I suffered through 14 years of orthodontic work and 18 pulled teeth. I had a cyst drained from an area that is immune to anesthesia. And of course, there was the aforementioned blood clot which went undiagnosed for weeks while my primary care doctor dismissed me, telling me over the phone that it was “probably just tendonitis.” Bikini waxes are cake walks to me.
So for the first time in my life after years of enduring cramps, I was surprised to experience pain so intense I felt like puking. I bent over the toilet, praying for vomit to end the waves of nausea rolling over me. But the vomit didn’t come.
I lay down on the cool tile floor and called downstairs.
“Nicky?” (Names have been changed to protect…myself from potential accusations of libel.)
He didn’t hear me. I was pretty much whimpering.
“Nicky? You should go home.”
We hadn’t been dating that long. Long enough to see me without makeup? Sure, whatever. Long enough to see me vomit all over the place? That might be a little too real this early in the game.
“Why are you lying on the floor?”
“Because I’m about to either barf or die.”
He helped me downstairs, put me on the couch, and went to the bagel shop to get me a plain bagel and tea.
I sipped the tea but only looked at the bagel with both longing and fear. I couldn’t bring myself to touch it.
Eventually, he convinced me to call out of work and let him take me to the urgent care clinic a few blocks away. While I was there, he went home to send off some freelance work and told me to text him when I was finished and he would pick me back up.
When they took me back into the examination room, I was startled to see someone I recognized from the gym. I still am not sure if she is a nurse or a physician’s assistant or what because all I could absorb through the buzzing of the unrelenting pain was that I was vaguely mortified that a mere acquaintance was now learning intimate details about things like the color of my blood flow.
She was wonderful, of course. She was empathetic and reassured me anything I said would remain strictly confidential. To be honest, I can’t even remember if they performed a physical examination or just asked me questions. All I remember is they told me go to the emergency room.
I texted Nicky that it was time to come pick me up, then promptly went into the bathroom and finally threw up. But there was no relief like I had hoped, and the painkillers I had taken earlier didn’t even touch the claws that were insistently shredding my insides.
Loathe to spend hours waiting in the ER, I called my gynecologist’s office instead and made an appointment for that afternoon. Then I called my mother crying.
“There’s something seriously wrong with me,” I sobbed into the phone.
I couldn’t face the prospect of sitting up straight for the 25 minutes required for me to drive myself to the doctor’s office, so my father drove into the city to pick me up. He yelled at traffic as I tried to get comfortable half reclining, half curled up, 100 percent bracing myself for every little bump in the road that caused excruciating pain throughout my stomach.
My doctor wasn’t there that afternoon; she was at the hospital delivering babies, so I saw another doctor in her practice and told her everything. The physical exam was painful and I felt humiliated when she told me all of the STD tests she planned to run, even though nothing about my pain and its onset screamed “syphilis.”
What she really thought though was that it was a ruptured cyst, and so she sent me back out into the waiting room to drink lots of water in preparation for an ultrasound.
By the time my mom arrived, I was curled up in the fetal position on one of the waiting room couches — something I would never ordinarily do in public, but something that at this point was my only choice. My mother told me she also thought it sounded like a ruptured cyst; she had had one when she was younger and remembered the pain being horrible.
Women are hardcore, are we not?
I was convinced a ruptured cyst was the answer, and I was ready for the ultrasound to confirm it. Unfortunately, in addition to the abdominal ultrasound, I was also treated to a transvaginal ultrasound. In case you don’t know what that’s like (which I didn’t), the sonography tech basically slips a modified condom over what looks like a dildo but is actually a transducer, lubes it up with imaging gel, then goes to town. It was NOT pleasant, especially considering I was already in pain.
Impossibly, when it was over, the doctor told me they didn’t see any ruptured cysts. They didn’t even see any fluid that might indicate there had ever been a ruptured cyst at all. Because the STD test results wouldn’t come back for another day or so, she preemptively gave me a prescription for antibiotics, another prescription for even stronger painkillers, and told me if I didn’t feel better by tomorrow, then I should go to the ER.
After all, she said, the pain was abdominal, not specific to my pelvis. So maybe it was appendicitis? Or gastrointestinal?
Call me crazy, but I’ve never heard of a case of appendicitis or food poisoning that also makes you bleed from your vagina.
As you may have guessed, conditions were not improved the next day. I was still doubled over and unable to even think about eating, and all the painkillers accomplished was to make me sleepy.
So this time my mom drove into the city to pick me up and take me to the ER. After hours waiting, I told my story to yet another set of medical professionals, and they sent me for a battery of tests.
Mercifully, the female resident took one look at me and decided to spare me another pelvic exam, trusting that yesterday’s gynecologist hadn’t found anything particularly enlightening up there.
However, another transvaginal ultrasound was in my future along with a CT scan, an MRI, a urine test, and blood work.
I wasn’t shy about telling them about my endometriosis theory. But the doctors were diligent, ruling out appendicitis, ruptured cysts (again), and who knows what other terrifying stomach problems one might see on a scan.
They tried to manage my pain, but to no avail. When the doctor offered me morphine, that seemed so extreme, it scared me, and I turned it down.
By the end of the day, when the resident came back with the results, I was eager to hear the answer and go home. Instead, she told me what I had been dreading — she had no answers at all. Everything looked fine.
“Yeah, seems like you probably have endometriosis. Here’s a prescription for some painkillers.”
After a day or two, the pain eventually subsided — never entirely, but enough for me to resume going to work and being…well, a baseline functional human being.
The next week I saw my regular gynecologist for a followup appointment. As expected, I had no infections, and we agreed on the next step.
One of two things had happened — the pain and bleeding had become debilitating, affecting my day-to-day life.
Surgery was on the docket for the following month. But before I left my appointment, she had one more thing to ask me.
“Do you need any painkillers?”
This is Part 1 in a series of essays on endometriosis, the gift that keeps on giving. According to the Endometriosis Foundation of America, endometriosis affects one in 10 women globally — so chances are, if you don’t have it, someone you know does. My experience with endometriosis made it glaringly obvious that awareness about the disease is woefully deficient. In sharing these personal details through this series of essays, I hope to contribute to raising awareness and reminding other women suffering from endometriosis that they are not alone in their experiences, it’s not “all in their heads,” and they are most definitely not crazy. The struggle is real. So if you liked what you read, please share it with the ladies in your life and read Part 2, Part 3, Part 4, Part 5, and Part 6.
Special thanks to the endlessly talented Jen Epstein for the awesome illustrations you see with this essay. My uterus has never looked more adorable.