Good Luck and Keep Us Updated
I stumbled down the hallway from my bedroom, severe abdominal cramps and nausea forcing me from my bed in the middle of the night. I stood up slowly while clutching my stomach, attempting to avoid further angering the beast wreaking havoc inside of it. I almost made it to the bathroom when I blacked out and collapsed outside the door. The next thing I remember is the sound of my roommate dashing out of her bedroom to assist me, but I couldn’t see anything and my body was covered in a cold sweat.
What I didn’t know at the time was that I have Endometriosis. Endometriosis occurs when the lining of the uterus (endometrial tissue) grows outside the uterus in areas such as the ovaries, fallopian tubes, bladder, or intestines. It can lead depression and anxiety, painful cysts and infertility. The cause is unknown and there is no cure, but there are treatments to relieve symptoms. There is a feeling that permeates the Endometriosis community — particularly noticeable in online communities — that despite the disease affecting 1 in 10 women, there is an astounding lack of research, resources and attention on Endometriosis.
After collapsing that first night, I curled up on my bathroom floor, fearful of straying too far from the safety of the nearby toilet, and counted the hairs that accumulate quickly in a bathroom shared by three women. “If I live through this,” I thought, “I promise to clean more.”
In the last few months alone, celebrities like Lena Dunham, Top Chef host Padma Lakshmi and singer Halsey have publicly addressed their struggles with the condition, sending a ripple through online communities — perhaps people are starting to pay attention. It wasn’t until I embraced these online communities that I was finally given a clear understanding of what Endometriosis would mean for me, apart from medical pamphlets or Wikipedia definitions.
“I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies,” Dunham wrote in an Endometriosis-focused edition of Lenny Letter, “and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it.”
I was put on hormonal birth control in an attempt to slow the growth of cysts and over the next several months I became accustomed to frequent ultrasounds and blood tests. During this time I was a bystander — a “lurker” — in online communities, thankful that my case seemed mild in comparison to many women who had to endure surgery after surgery with little relief.
A few months after initially collapsing, I learned that my cysts were getting larger and would need to be surgically removed. This marked the moment that I became one of them — one of the women who needed surgery as a result of Endometriosis. Thus began the process of trying to understand what may have caused it. Did I eat the wrong things? Did I drink too much? Was it my preference for diet soda? I spent many hours going through old posts from women in online communities who shared their stories before I finally accepted that having this condition, having this constant throbbing in my abdomen, was not my fault.
In my case, finding out I needed surgery and scheduling the procedure did not happen concurrently. My doctor only performed surgery on Long Island so I had no choice but to find someone else. I do not have any family in New York, so I considered having the surgery in Pennsylvania so I could recover surrounded by loved ones, but the reality of attending pre- and post- surgery appointments made this idea impossible. My doctor recommended a surgeon in the city, but he was fully booked for months so I was referred to yet another doctor. I would have to wait three weeks to see her but she was my best option.
While the appeal of the upcoming appointment with a doctor that could finally fix me carried me through the weeks of uncertainty, my crumbling mental health became undeniable. Endometriosis affects hormones which in turn affects mental health and the added anxiety over finding a good doctor and undergoing surgery were not the healthiest of circumstances for my brain. Concentrating on work was nearly impossible and I preferred spending my weekends consuming Netflix rather than enduring the exhausting task of socializing. That initial appointment with the new doctor was the light at the end of the tunnel — the twisting in my abdomen would soon go away, my mind and body would be healthy again.
By this time, the cyst in my ovary constantly throbbed. I feared that it would burst so I avoided using my abdominal muscles, pushing myself up out of bed or pulling myself out of my desk chair the way pregnant women do, except this was due to a “chocolate cyst” rather than a bundle of joy. The constant bloating caused me to spend the summer in an oversized dress, one that appeared so often on my body and on my Instagram feed that my friend lovingly refers to it as “The Dress.” I later wore it with pride on New Year’s Eve, celebrating my triumph over a challenging year.
On the day of the appointment, I left work early and the few close women in the office who were aware of my saga wished me well. I was on edge when I arrived and the maze of an office building did not help. The women at the reception desk were brash and in a hurry and I waited for 40 minutes for my appointment. When I finally met with the doctor, she told me she wouldn’t be performing any surgeries for months because she was moving to a new practice. Oh, and she was sorry to have disappointed me. I half-listened for the remaining moments of our brief meeting, mustering up every bit of strength I had to keep from crying in front of her. When I left her office, I barreled past the reception desk and out the door, finally allowing for sweet release of hot tears to flow freely. I forfeited any concern for the comfort of the strangers I passed in the lobby, or on the street, or strolled by me as I processed this moment on a park bench that became my hideout for the next hour.
By the time I had gotten home that night, the determination to fix my body led me the place I’d normally go for a good unsolved mystery or cute animal gifs, not medical guidance. Reddit. There is a subreddit dedicated to Endometriosis and having nowhere else to turn, I decided it was time to quit “lurking” and make a post.
“I’m feeling really lost and overwhelmed,” I wrote. “I can feel the pressure of the cyst in my body. How did you find your surgeon?” By the next morning several responses steered me in the right direction, included one that said “I’m so sorry you’re going through the run around, but consider this — if you get in with an excision specialist all those other so-so surgeons kind of did you a favor by NOT operating on you. Good luck and keep us updated.”
That day, I found a specialist who was also highly recommended by the Endometriosis Foundation of America. When I called, the receptionist was very kind, thorough and set me up to have a consultation with the doctor in two days. I set the surgery date during that first consultation, and met with a nurse to go over everything I could expect over the next few weeks and months.
Even though I had MRIs, blood tests, and the reality of surgery right around the corner, the weeks leading up to my procedure were calm relative to the uncertainty I had been living with. I wasn’t afraid to be open about my health friends and colleagues.
On the morning of surgery, my mom and I took public transportation like it was any normal day with the rest of the commuters on their way to work. There wasn’t a lot of waiting around before I met with a nurse, anesthesiologist and my surgeon who drew four little marks on my abdomen where she would make incisions. I was led to the operating room, hugged my mom and laid myself down on the table where a number of figures dressed in all white scurried around me. Before I knew it, I was counting down from 100.
When I woke up, my doctor told me the cyst was larger than a golf ball but she was very happy with the procedure. I spent a few hours being pumped with painkillers while recovering before I was wheeled into a cab and sent on my way. I spent the next week sleeping, laying around and averting my gaze away from the gruesome incisions on my belly. Those incisions have turned into scars now, my little badges of honor.
My Endometriosis hit me fast and hard but with a little work after recovering from surgery I felt normal again (apart from a heightened sense of hypochondria). I’m lucky. Many women and girls suffer for years before ever getting the proper diagnosis.
“What if I had been diagnosed at 20? Or 25, or 30, or shit, even 35? I didn’t get help until I was 36,” said Padma Lakshmi in an interview with Lenny Letter. “Think of all that time that I lost: times that I couldn’t go on a second or third date; times when I missed jobs; times when I missed school exams, school dances, volleyball games, being present for my family, being present for my girlfriends, taking an extracurricular activity, being emotionally and physically OK. That’s one week every single month for all those years. That’s 25 percent of my life, and I could never get that time back.”
While it was difficult to find the right doctor, online communities helped me understand what I was going through in a way that nothing else could and they continue to be a strong support system for me. I check in almost every day, cheering on the other women on their good days, or lending an empathetic ear on their bad days. Now I get to be the one to say, “good luck, and keep us updated.”