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Her Story: I Have Endometriosis

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I never thought I would take my period for granted. I didn’t think that at 21, I’d be going through hormone-induced menopause. I couldn’t have expected that I’d spend most of 2012 bleeding continuously and ruining countless pairs of underwear, anything white, my mattress and even a couch. The story of my college experience is much different than the one I thought I would write one day. I never would have expected that I’d be writing a much different story, a story with no ending, a story I still write today.

In late August of 2011, while my friends were planning end-of-summer beach trips and farewell parties, I was watching heat radiate off the Boston skyline from a metallic, chilled hospital bed on the sixth floor of Boston Children’s Hospital. In a way, my solitude was almost too perfect. I had withdrawn from Loyola University Maryland that May after being accepted to transfer to Boston College, and I was leaving behind great relationships for a place filled with strangers. But after a month of emergency-room visits and uncontrolled agony, my hospital admittance was a relief.

My PMS was now an omnipresent nightmare. Every day I felt like my cramps might paralyze me, and my headaches could easily knock me out. I’d been taking antibiotics for infections I didn’t have. I was exhausted by doctors saying, “I don’t know,” asking, “Are you sure that it hurts when I press here?” and prescribing me Vicodin and hopelessness. I thought that after my three days under observation, I’d leave with an answer to why I’d spent the last month as a slave to my reproductive system. And for the most part, I thought wrong.

I thought a lot about why I was even there in the first place. I thought I was relatively normal. I got my period for the first time when I was 12 and thought I was just unlucky to have terrible PMS. I had stayed home from school before because my cramps were too awful, and more than once I had thrown up during my period. Was it such a surprise that I had back pain? Didn’t every girl have back pain during her period? According to my pediatrician during my annual checkup, no. Cue the hour-long drive down the Jamaicaway at 4:30 p.m. on a Friday, the opening act of my next month of hospitalizations.

A month after that first checkup, as I sat in that bed in Boston Children’s Hospital, I was embarrassed, scared and in pain. Everything from my diet and exercise to the date, length and intensity of my last period was written on a whiteboard in an office I’d never see. After four trips to the emergency room in the last month, I still couldn’t figure out how to correctly tie a hospital gown. I didn’t even have socks with me.

The resident observing my case told me that after everything the doctors had done, they still didn’t have an answer for me. I couldn’t help but laugh, though, due to the amount of morphine I had been administered. I was given hospital booties and a business card for an adolescent gynecological specialist, and I walked out of the hospital still unsure as to what was going on inside my body.

On October 12, 2011, I finally got an answer. Earlier in September, during my first semester at BC, I’d agreed to a laparoscopy to determine if my symptoms were being caused by endometriosis. Endometriosis is a disease where the tissue that lines a woman’s uterus (which sheds and is bled out when she gets her period each month) grows externally from the uterus, commonly on her fallopian tubes, her ovaries, her bladder and her rectum. A laparoscopy is a minimally invasive surgery during which a small scope is inserted into the pelvis so that surgeons can see if there was tissue deposited where it wasn’t supposed to be. Laparoscopies are the only way for doctors to definitively determine if a woman has endometriosis.

I woke up from the anesthesia with my dad sitting next to me, and I asked him if the doctors had found anything. Going into the surgery, I was convinced I was missing my best friend’s birthday for nothing—that the doctors wouldn’t find anything wrong. He explained to me, as my surgeon did as well a week later, that I had stage-two endometriosis. Endometriosis has four stages, one being the most mild, and four often requiring that the ovaries or uterus be removed. While the surgeons had been successful in removing most of the tissue, the growths had fused some of my reproductive organs together, which was likely the cause of some, but not all, of my symptoms.

Over the next couple of months, I learned that more than five million women in the United States suffer from endometriosis and that there is no cure. Some women experience no symptoms, but some women experience severe cramping in the abdomen and lower back, fatigue, nausea, vomiting and pain during sex. If not treated, endometriosis can cause infertility.

In the two months following my surgery, I thought, “Hey, no problem, I’m all good!” But I was so not good. My periods had been “turned off”—meaning that I took my active birth control every day and skipped the placebo pills so that I didn’t get my period. I was warned that missing a pill even by 15 minutes could cause breakthrough bleeding. I should have heeded that warning.

From January 2012 to November 2012, I got my period every single day. Because of the severity of cramping that I still experienced after the surgery, I couldn’t wear tampons. So, essentially, I was a sophomore in college at a new school, wearing diapers every day, staining perfectly good pairs of underwear regularly and surviving on ibuprofen and cranberry juice. Intimacy with my new boyfriend was practically impossible. Working out, walking in heels and even carrying my backpack to class felt like trying to pull myself out of quicksand made of glass. I actually ruined my friend’s couch after watching TV with her for an hour, having bled through not only my pad, but my underwear and my jeans, too.

Another trip to the emergency room that summer catalyzed a horrific trial of treatment plans, continuing a battle I thought I’d won months ago. I started getting Lupron injections, which are designed to decrease the estrogen levels in a woman’s body, every three months, which stopped my bleeding but presented a new set of symptoms caused by menopause. My body aged from 21 to 65 in a matter of weeks. I changed my shirts three to four times a day from the hot flashes and I slept with all my windows open in the dead of winter to attempt to combat night sweats. My bone density dropped significantly. More noticeable to my friends and family, however, was my weight and hair loss. I wasn’t bleeding, but I wasn’t happy or healthy either.

A few months into treatment, I began to experience ocular migraines, causing the left side of my face to become numb. I was taken off the injections and I started taking a progesterone-only birth control pill. Today, a year later, I rarely bleed. But that’s about the only significant improvement.

My worst symptom is a loss of innate femininity. My hair will never grow long because I don’t have a lot of estrogen in my system. I can’t offer my girlfriends a spare tampon when she runs out because I haven’t bought one in two and a half years. High heels hurt my back, ellipticals make my pain radiate and I’m not even sure if I can have kids. While I have some symptoms under control, others persist, and some will never go away.

Until recently, I was embarrassed of my endometriosis, and I was overly sensitive about what it did to my body. I’ve come to accept that endometriosis is something I have, not something I live by. Looking at the little, positive things balances the bad things. I give myself a little high five knowing I’m saving hundreds of dollars on feminine products, even though my girlfriends don’t always understand why I don’t want to go to the gym with them. I rock short hair and experiment with styles that wouldn’t ever work on everyone else’s long hair. I make choices about my body by deciding what I want for myself, not what my endometriosis wants for me.

 

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