By Victoria Bilcik
Endometriosis is a condition in which the lining of the uterus overgrows and encapsulates surrounding reproductive organs. It’s not necessarily deadly, or an immediate infertility sentence, but it’s rarely talked about and widely undertreated. Just about every woman in my family that I’m close with have battled endometriosis almost entirely in silence. Until I came forward with my own struggle with my reproductive health, I had no idea that my blood relatives had been left permanently scarred and even infertile as a result of the condition. One case went untreated for so long that a woman in my family nearly bled out and underwent an emergency hysterectomy. As I’ve read more about endometriosis over the last year, I’ve learned that over 10% of women are estimated to live with the disease, but that number is predicted to be an understatement because of the stigma associated with reproductive pain felt by folks with a uterus that quite literally shames them out of seeking treatment.
I spent a good chunk of my young adult life fighting for better reproductive healthcare, and I want to share my experience with people who have been through something similar, or have no idea sexism still runs rampant in healthcare in 2016. This is just my account as one young, cisgender, white woman in a monogamous relationship with a man, but I’ve learned in my experience that far more uterus-bearing folks have been through this than I expected. So maybe if we all come out and share our experiences, we can normalize these conversations and demand to be taken seriously.
Part 1: Learning to listen to my body
When I turned 10, my mom bought me a book called My Body and Me. I read the book from cover to cover, just like mom said I should.
“What’s a period?” I asked.
“Ask your doctor.”
When I asked my lifelong pediatrician just like mom said, she said something along the lines of “It’s natural, don’t worry about it.” But somehow, it felt wildly unnatural to be back in her office 5 years later describing the debilitating pain I experience for weeks at a time that coincides with exactly the process she herself called “natural.”
I hate talking about my body because I’ve grown to believe that my body hates me. For the longest time, nobody could tell me why, no matter how many tests were run or how many strangers poked and prodded the parts that my mom called “private” all my life. I felt like my body was rejecting what’s supposed to be natural about having a body with a vagina and ovaries and all the parts in between. Dr. Free said birth control should do the trick; sometimes bodies naturally do this to us women.
Birth control? I didn’t want to have sex, I just wanted to quit feeling like an 18-wheeler was plowing through my cervix. Imagine a fifteen-year-old explaining to my suburban Catholic family from small-town Connecticut that the solution to my missing classes and vomit-inducing pain was birth control. But that uncomfortable conversation turned out to be the beginning of a lifetime of chemical regulation of processes in my body my middle school health teacher insisted were “natural.” My dad refused to watch me take my pills for the six years they were prescribed to me.
As my pain grew more intense and less predictable—and after I had decided that I do, in fact, want to have sex—I decided enough was enough. I knew plenty of healthy, sexually active women who didn’t constantly find every single penetrative experience interrupted by an explosive pain rippling through their pelvis. For fuck’s sake, I’d been in the same monogamous sexual and romantic relationship for almost two years at this point. This was not and should not be normal.
I remember the first time I told my mom what was happening to me, and quite frankly, I was embarrassed. I proudly call myself a feminist and tell anyone who will listen that women should be empowered, embrace the body parts they have, and refuse to keep quiet about their pain or discomfort, especially when it comes to sexual and reproductive health. I could put period shamers in their place without thinking twice, but was in denial about my own excruciating pain for over a year.
But when I finally mustered up the courage to make that awkward phone call make an appointment with a new gynecologist, I was swiftly reminded why women need to be encouraged to talk about their own comfort with sex in the first place. My pleas for appointments were met with prolonged sighs from agitated receptionists who couldn’t fit me into anyone’s schedules for 3 months.
Their favorite question to ask? “Are you sure the pain is really that bad?” And that was only the beginning.
Part 2: Diagnosis
After weeks of waiting and dozens of phone calls explaining my pain over and over again to faceless fed-up nurses, I found myself in an unfamiliar doctor’s office in Boston, the city I now call “home.” And honestly, I’ve never felt more unwelcome than I did sitting on that exam bed. The smell of rubbing alcohol filling my lungs as I listened to Pauline insist my pain was caused by posttraumatic stress disorder as a result of a rape years prior—a diagnosis I reluctantly confessed after her unwelcome exploration of my body sent me into a frenzy of flashbacks and cold sweat.
No matter how many times I told Pauline my therapist and I had already ruled out my PTSD as a cause of my pain, she insisted I see a specialist in psychologically-induced pain. I left her office and cried for days. I should have known this was coming.
I visited home a few weeks later. Maybe my mom’s doctor could help me. It felt pathetic, a 20-year-old seeing mom’s gynecologist. Jen was the fourth or fifth doctor at this point to ask me to detail my sex life. And of course, there was that glaring diagnosis in my medical history which apparently made it impossible for me to experience legitimate pain. She told me, “It’s probably the rape.” I told her I knew it wasn’t. How could she explain my cripplingly painful periods I had experienced for years prior to even meeting the man that attacked me?
“Well, sometimes women’s anatomy is naturally painful.”
“Sometimes sex just hurts for women.”
“If it’s really that bad, take some Advil, ideally 30 minutes before you have sex.”
After I insisted she do something to help me besides spew sexist bullshit, she finally ordered me an ultrasound. The external ultrasound was a piece of cake. The cool jelly on my stomach was a soothing reminder that I might finally find some answers. The hard part was the internal ultrasound, as the technician—I think her name was Rose—probed my insides with a camera the length of my arm. As Rose guided the camera inside me, a piercing sensation detonated from so deep in my body it seemed to shatter every pain receptor I had. My screams pierced the chilling silence of the lab. It was so loud I made my own ears throb. I clawed at the gross beige leather of the exam chair that I swear was shrinking, and all she stopped to say was “This shouldn’t hurt.” Not once did she stop to ask if I was okay.
“There’s nothing wrong with you,” Rose said, or at least that’s how I remember it. “But I’ll let the doctor tell you that.”
For days, I wouldn’t let anyone touch me. I couldn’t sleep, but I couldn’t bring myself to leave my bed, either.
Jen called me a few days later to tell me my ultrasound showed “nothing abnormal.” And even though every doctor I had seen before her all said endometriosis might not show on an ultrasound, she officially prescribed vaginal rehab and cognitive therapy. I was numb.
I figured nothing at this point could possibly make me feel any worse, so I visited the doctor Pauline referred me to. As I already knew, she was a specialist in vulvar pain with specific instructions to examine me for trauma-induced vaginal pain. Luckily, she ruled this out immediately and shared my frustration that so many people had failed to understand me beyond an arbitrary psychological condition. She referred me to Liz, with some slightly awkward sex advice to hold me over in the meantime, because “you’re young, this shouldn’t ruin your sex life.”
After four months now of invalidation and frustration, seeing Liz was easy. She asked about my trauma without invalidating my experience.
“Did you know him?”
“That sucks, but that doesn’t make your pain less real. So where do we go from here?”
Until a couple of years ago, I spent a large portion of my young adult life convinced it was normal for sex to hurt. This lie was introduced to me in high school and was reaffirmed by doctors who told me I was probably just nervous or being over dramatic. I cried tears of relief when Liz said my symptoms were consistent with endometriosis. Finally, it had a name. I was ready to lay this part of my life to rest. That meant scheduling surgery. Shit.
Part 3: Treatment & Recovery
The weird—and kind of scary—thing about endometriosis is that doctors need to perform laparoscopic surgery to even diagnose it. Luckily, they normally can remove any problem tissue laparoscopically as well. But that means I had to brace myself for surgery, a diagnosis, a treatment plan, and possible consequences of the procedure to be dropped on me all at once. All the unknowns were terrifying.
My appointments were cancelled on me twice before I actually had surgery. The first time, it was because of a “scheduling conflict.” The second time, I was in prep at six in the morning when my surgeon called out sick. Great.
When I called the following business day to reschedule, the receptionists could only give me tentative dates they could confirm days before the surgery would happen. I explained that I work in retail, that I’ve already requested four weeks’ worth of time off, and I couldn’t financially afford to unnecessarily miss any more days of work. I needed a confirmed date.
The receptionist responded with “Honey, there’s no need to get so upset,” as if a month’s worth of unpaid time off isn’t something to be taken seriously. She proceeded to tell me about how her daughter tried to tell her she had anxiety, but she “told her we women just get ourselves worked up over nothing sometimes.” Was this supposed to be a pep talk? Because it felt like a huge invasion of her daughter’s privacy, and really fucked up.
I didn’t sleep the night before my surgery. My therapist wanted to prescribe me Xanax for the first time because I was so shaken up in the weeks leading up to my procedure. It didn’t matter how many times she told me “they’re professionals and this is their job.” I couldn’t stand the thought of letting go of my consciousness, autonomy, and decision-making ability for a few hours so someone could work on an area of my body that had already been violated in the worst way, but I knew I had to.
On the day of my surgery, I found some comfort in that my team consisted solely of women. I comforted myself the only way I knew how: ask lots of questions. The more I knew, the better I felt. But one nurse interrupted me, asking “Why are you asking so many questions? You’re not going to remember this once we give you anesthesia anyway.” I remember everything up until the moment they laid me down in the operating room. When I fully regained consciousness a few hours later, I found out from my mom and boyfriend who accompanied me to the hospital that nurses wanted to sedate me as I was waking up from anesthesia. If my memory serves me right, I cried a little because 5 hours had passed when the procedure was only supposed to last 45 minutes, I had just been informed that I almost bled out during surgery, and I would have to spend the night in the hospital when this was supposed to be an outpatient procedure. But I was on anesthesia; I couldn’t even move. I remember laying there, delirious, in tears, asking to see my mom. But sure, I was being unruly and belligerent.
But I digress. By then, a Y-shaped device the size of my pinky finger had been situated just above my cervix. My IUD continually regulates the hormones of the reproductive system that people still insist defines my femininity. Liz said whatever spots of endometriosis were triggering my pain were too small for the human eye to see, but the hormones in the IUD should keep them from triggering any pain. She was right. My pain was invisible, but treatable.
I don’t get my period anymore, and sometimes I can even forget the torture my body has put me through for a few moments of solace. But my relief is met with bitter judgment from other women who admit they have never been through anything similar.
“It just doesn’t seem natural to not have a period.”
“My period makes me feel like a woman, you know?”
“Aren’t you afraid of the side effects?”
I try my best to stay positive, knowing I’ve found a form of treatment that works for me, at least for now. This is my body and my choice, and although some people may feel certain that it is “too unnatural” for them to understand, they will never know the hell I’ve been through to get here. Sometimes I still struggle with the idea that the body parts that once could have carried my now-unimaginable future child seem to have turned against me, and I’ll probably struggle with that for the rest of my life as I constantly monitor and maintain this condition. But I’m finally in a place where I’ve regained a sense of autonomy, a sense of control over my body, and a sense of sexual freedom. Without a doubt, this was worth the fight.
Tori is a senior journalism student at Emerson College with a minor in women’s, gender, and sexuality studies. She’s slightly obsessed with dog spotting, New England winters (yeah, seriously), period positivity, and taking naps on public transportation.