Living with Endometriosis
It started when I was in my pre-teens. I was on my scooter in my neighbourhood when I was blinded by a sudden pain in my abdomen. I was alarmed by how sudden the pain had come on, and the increasing intensity. I made my way home as quick as possible. In my haste to get in the house, I nearly threw my scooter aside. "Mom! I think I have to go to the hospital! Something is very wrong!" I was frantic. I lay on the ground in front of the bathroom in the fetal position, explaining my symptoms to my mom. She suppressed a chuckle and said "Welcome to cramps!" I was horrified. "Do you mean I have to go through this every month?!" She did laugh this time, and said "Unfortunately, yes. It's part of being a woman! But they shouldn't be this bad for too long. They'll get better as time goes on."
A few months later I went to Girl Scouts camp. It was my first time since getting my period, and I was terrified that I would start my period while at camp. In the time between my first cramps and camp I had begged my mom to let me skip camp that summer and stay home. The cramps were constant. It wasn't as bad between periods, but I was nearly always in pain. She assured me every month that it would get better, and by the time I was at camp I'd have forgotten all about my worries.
That summer I hid in my bunk in the fetal position in excruciating pain as I got my period. Since no one seemed to be experiencing even close to the same thing, I didn't feel like I could talk to anyone about what I was going through . It didn't get better from there. In the coming years, Midol became my best friend. I didn't want to do anything outside of the house for fear that my cramps would strike in front of someone other than my mom. My period was still very embarrassing to me; it wasn't something that even my friends talked about.
One summer, I invited my best friend to join us at my family's cabin. The pain got so intense that I kneeled down immediately where I was onto the kitchen floor and remained there, in the fetal position, for the rest of the day. The excuse I told my friend, who was a boy, was that I was sick. He spent the day entertaining himself on the other side of the room until my aunt, to my horror, exclaimed: "Your periods will get better!" I was mortified. (To this day we laugh about it because he was as mortified as I was!)
Still, I couldn't help but feel like the pain wasn't as common as everyone was treating it. Why was no one else on the floor in pain every week? Every time the cramps would hit (nearly daily) I would tell my mom that it didn't feel right. She assured me I would get used to it, that it was just new to me, and told me that I had a low pain tolerance as it was. But by the time I was in high school, despite her doubts, she took me to the gynaecologist. Pretty soon I was pouring out years of pain to the doctor, who calmly sat there, nodding. I was so worried that she would say "oh that's just cramps!" and send me on my way.
To my surprise, and relief, she started explaining something called Endometriosis to me. A condition where the uterine tissue grows outside of the uterus. She recommended that I start taking birth control to ease the symptoms and tame my period, which had been so irregular that I could bleed as little as 2 days or as many as 16 with no discernible time in between. However, the doctor also told me that the Endometriosis was not an official diagnosis without surgery. To be safe, she wanted to check and see if I might have any cysts.
A few weeks later I was back in the gyno to have my ultrasound. Luckily, they didn't find any cysts. But they did find that my uterus was nearly perpendicular to the angle it should've been at. My surprised technician said that sometimes it's another symptom of Endometriosis; when some of the rogue tissue pulls the uterus in one direction. But that she had not seen it so severe.
I was feeling much more confident after my almost-diagnosis. It wasn't in my head! The embarrassment of talking to my parents about starting birth control was overshadowed by the overwhelming satisfaction that I was starting to get answers. But where to go from there? A laparoscopic surgery would offer relief but what if I didn't have Endometriosis and my mom paid for the surgery? It weighed on my conscious for a while before I decided to go forward with it. The day before we went to the out-patient centre, I pressed my back into the seat of the car and my legs into the dashboard as I tried to breathe in the fresh air coming from the window. I cried in frustration from the pain. To prepare for my surgery I'd had to stop my birth control. Nearly every day was unbearable. My mom told me "Tomorrow, it'll be better."
When I was 17, I had my laparoscopy.
As I came out of the anaesthetic fog, I was distraught. I couldn't fully talk yet but I worked myself into a near (drugged) panic trying to communicate with the nurse, who told me to rest. Once I could semi-form words, I slurred "Did they find anything?!" Holding onto my arm she assured me that they had, in fact, found the Endometriosis and removed it. I finally let myself slip back into a peaceful sleep.
My recovery was pretty painful. They had made a small incision at my belly button that now felt like they had sliced open my entire abdomen. But I wasn't cramping. During my check-up at the gyno, I started on the birth control again to help slow future growth. Endometriosis isn't curable, only treatable. It might not come back, but oftentimes it does. Months later, the pain started creeping back. It took a while to come back full force, but soon my periods were once again intolerable. My gynaecologist recommended I start continual birth control (no sugar week). With no period, there would be fewer days of intense pain.
Less than a year later, at 18, I moved away to start college. My first year of college was a blur of new class schedules, new friends, and insufferable pain. In the back of my head I knew I had to do something about the pain, but could I maintain a surgery every 2 years? I didn't have the money, and it would be physically draining. One day I was feeling very light-headed in class. I left immediately after my class ended, abandoning the rest of my schedule. As I sat at my desk working on my homework, I felt myself slowly losing consciousness. I was tipping out of my chair when I snapped out of it and pulled myself back up. The rest of my day was spent in bed until the pain truly hit.
It was 11pm, and I was alone. I lay in the hallway between my bedroom and bathroom. My friends were asleep, ready for early classes the next morning. I didn’t have a roommate. Sobbing, I called my mom to feel less lonely. She contacted the on-call emergency line at my gyno and they recommended that I go to the ER immediately. Without enough money for an ambulance or hospital visit, I stayed in the hallway on the phone until I finally fell asleep.
It was the last straw. I went to visit my parents during the next school break and booked an appointment with my gyno. We decided that the best course of action would be to start a Lupron treatment. To essentially "starve" the Endometriosis, the Lupron strips you of estrogen. In other words, induced menopause for 6 months. My doctor stressed that many women didn't complete treatment because the symptoms of the medication were unbearable. Unfortunately, with the estimated position of my Endometriosis, surgical removal wasn't really an option anymore.
My first 3 months went well. I didn't have to take birth control but got the benefits of it. The next 3 months I was a mess. I couldn't sleep, I had night sweats so bad that I had to change my sheets and pyjamas every night, I would cry at anything, happy or sad. My anxiety went through the roof. It hit me so hard that I didn't know what to do. But it was in my system, and I had to wait the 3 months for it to clear out. During those months, I started seeing a counsellor, and did everything I could to take care of myself. The treatment finally ended and my pain was once more dulled enough to feel normal.
It has now been 6 years since my treatment ended. I have mild cramps most days, and some days are unbearable, but it's manageable enough that I'm not currently considering another surgery or treatment -just yet-.
Endometriosis is surprisingly common. Even worse, it's still highly undiagnosed and when properly diagnosed, there is a 7-10 year delay. Some women go through many doctors before the condition is even brought up as a possibility. However, it's still estimated that over 11% of women in the U.S. have Endometriosis. I was lucky to have a doctor who was familiar with diagnosis and treatment. Not all women are so fortunate. So what can we do?
Most importantly, talk. If you are experiencing symptoms, see a doctor. If you have been diagnosed with Endometriosis, don't be afraid to talk to friends and family. Just because it has to do with women's health, do not be ashamed. The more that this illness is talked about the more people will become aware, and the closer we are to working on finding a cure. In recent years, celebrities have started opening up. Lena Dunham (Girls), Lara Parker (Buzzfeed), Whoopi Goldberg (Talk Show Host), and more have spoken out about living with Endometriosis and what it has meant for them. Go out there and strike up a conversation!