My personal journey and search for answers before and after being diagnosed with a disease that we don't talk about enough.
“So…it hurts when you get your period? Isn’t that how it is for like, everybody?”
"Pull over. Mom, pull over. Please. Now." I leaned out the door as we stopped at the side of the road and vomited, my body shaking with pain. My mom rubbed my back, asking "Was it something you ate? Or maybe it's the flu?" I heaved again, shaking my head. I knew it wasn't the flu. Whatever it was, it felt like it was ripping apart my stomach all the way down to my pelvis. It was the fall of 2001 and I was twelve years old. My mom and I were driving to my brothers' football game when I started to feel sick. She turned the car around to head back home; a 20 minute drive that took forty minutes because we had to pull over five more times. Later that night, my mother called 911 as I writhed on the ground, convinced an alien was going to pop out of my stomach. I rode in an ambulance for the first time in my life that night, which began a four year stint of ambulance rides, painful tests, IVs, hospital beds, and watery jell-o.
When I was sixteen years old I was diagnosed with Endometriosis. En-do-me-tri-osis. I always have to say it twice when I explain it to people. The first time I say it, it just sound like a silly word I made up. Endometriosis is a painful illness in which tissue that should line the inside of your uterus grows outside of your uterus. Unfortunately, the tissue keeps doing what it thinks it should; it grows, breaks down, and bleeds with every menstrual cycle. With no way to exit the body, this tissue inflames, irritating surrounding tissue and causing severe pain during your period. In basic terms: Stuff is not where it's supposed to be down there in my good old uterus, and it makes my monthly lady times even more unbearable than usual.
I got my first period when I was twelve, and in all honesty, it was pretty uneventful. I had no elated moment of "I'm FINALLY a woman!" Actually, I thought something more along the lines of "Oh great, as if middle school isn't tough enough." The first few months of having my period passed without any sign of trouble, and when the trouble did hit, I had no idea it was related to my period. It would start with severe nausea. I would begin to burp constantly, feeling the bile rise in my throat each time. Then the pain would strike, hot and strong, like a poker in my pelvis, twisting and pushing. No matter how I stood, sat, or lied down, I couldn't get the pain to stop. I would start to vomit every twenty minutes. Everything from crackers to water and aspirin refused to stay down, and I couldn't get hydrated. I would cry and plead with god and the devil and whoever I thought would listen to make it stop. Sometimes I would feel as if I could pass out from the pain; the agony making my vision go hazy.
I remember my first time in the hospital; the nurse showed me a cute little chart of ten faces, the first with a big grin and the last with an equally large frown. "On a scale of one to ten," (Smiley face to frown-y face) "Where is your pain?" When I pointed to indicate that Mr. Frown and I were on the same page, the nurse smiled patronizingly. "Sweetie…. Let's not exaggerate." I considered vomiting on her to make a point. Instead I thought, "You just wait, you dumb broad. The doctors will do some tests and figure out I have appendicitis or something equally awful and I'll have a painful surgery and that'll show you!" It wasn't appendicitis.
Ten hours and five tests later, I was sent home. With no diagnosis. My doctors told me that it was probably the flu. My pain subsided thanks to an IV, and my mom took me home, as tired and confused as I was. About a month passed, and I was back in the hospital again. I held a bucket on my lap, my face flushed not only from vomiting but from embarrassment. My mom held my hair back as we sat in the waiting room; my eyes darted over the bucket at the people staring at me like I was a freak. I wanted to scream, "This IS a hospital right? This is where SICK people go and I'm sick, so piss off!" Another night of X-Rays, CTs, and a few painful tests (Imagine a tube being inserted somewhere it does NOT belong), and I was heading home again with no diagnosis.
If I had a dollar for every sleepover I had to leave early, every party I missed, every meal I couldn't keep down, every night I spent in a hospital cold and afraid, I'd be a rich woman. Or I could've at least paid my hospital bills. After two years passed with no diagnosis, and at least one night each month spent in a hospital, I began to have bouts of intense panic. My first thought: "What is going on inside me?" The second, most terrifying thought: "It's going to kill me before anyone can figure out what it is." Month after month I would worry about when the pain would strike next. I would watch countless episodes of House and wonder, "Yup. That's what I have." Years passed, and by the time I celebrated my fifteenth birthday, my unknown illness had practically become a part of the family. I had a monthly reservation at the Hotel Hospital, with my very own room and free paper gown with each visit. Once in awhile a doctor would decide I was allergic to this or that. I would cut whatever it was out of my diet, thinking that maybe, just maybe it would do the trick. It never did. Disease after disease was ruled out, but we didn't seem to be any closer to finding out the true cause.
I became withdrawn, and because I kept missing school, I felt distanced from my friends. I was frustrated, scared, and depressed, and I knew it was taking a toll on my mother as well. I can only imagine how difficult it was for her, to see her youngest child and only daughter suffer and not be able to help. But, in the end, it was my mother who came to the rescue. She started researching my symptoms online, hoping to find what the doctors couldn't. I have to admit, I didn't have much faith in Google searching "Tummy ache", but I knew neither I nor my mother could deal with another year of the pain and the wondering. After a particularly rough stint at the hospital, I was heading home again with: You guessed it, no diagnosis. But when I got my period the day I left the Emergency Room, my mother began to piece things together. My symptoms coincided with those of Endometriosis.
A week later, I was headed to a gynecologist. A few hours later, I shockingly, unbelievably, walked out with a diagnosis. Well, a preliminary diagnosis, but finally, something to go on. On the way home, I cried silently in the passenger seat. I was completely overwhelmed. I couldn't believe that one trip to the gynecologist answered a question I had been asking for years. I was relieved, but I was angry. It drove me crazy to think that the last three and a half years of pain could've been erased with a solitary doctor visit. After the anger passed, I started to feel…safe. I figured that the diagnosis was pretty much the first and last step to getting better. I was young and naïve; all I could think about was getting my life back. As I talked more with my gynecologist, and I learned more about Endometriosis, I slowly realized that I wouldn't be getting back the kind of life I'd had in mind.
The summer before my junior year, a few days after my sixteenth birthday, my doctor told me my chances of ever having children were very slim. I had been put on a form of birth control to ease my symptoms, but it was explained to me very early on that there was no real cure for Endometriosis. Being sixteen, I didn't give it much thought. Silly as it may seem, I equated my birth control with the closest thing to a cure I could get, and that was fine with me. However, each year I grew increasingly more curious about Endometriosis and the long term effects. I learned that Endometriosis is one of the top three causes of infertility and that 5.5 million women in North America has the condition. Many women opt for a Hysterectomy, which is said to eliminate the symptoms completely, simultaneously erasing the chance to bear children. Being so young, it wasn't an option I planned on utilizing. I read so many stories about Endometriosis going undetected for years, and for the first time I didn't feel alone. I was one of many, but as much as the thought empowered me, it confused me as well. You would think that with as many women are living with this disease I wouldn't have to continually answer the question. "Endowhat?" Explaining Endometriosis isn't that bad. I have my speech perfected to a T, and reciting it makes me feel like Doogie Howser. The worse part of it is the reaction it gets: "So…it hurts when you get your period? Isn't that how it is for like, everybody?" I stutter, trying to explain what it feels like to have pain spread from your stomach to your toes; to feel like your insides are being pulled out of your body; to be thirteen and terrified that whatever is ravaging inside your body can and will kill you . I instantly flashback to that first hospital visit; to the nurse who was convinced I was "being a bit dramatic" about the extent of my pain. You wouldn't believe how hurtful it is to have friends, strangers, and even some members of your own family downplay the most terrifying and excruciating thing to ever happen to you. I started to imagine the 5.5 million women around the country desperately explaining, "Look, your cramps have nothing on my cramps, okay?"
I am now twenty-five years old, and the subject of my Endometriosis sometimes still feels new to me. I can go for weeks and weeks barely even thinking about my condition. A couple years ago I started using a different form a birth control called Implanon. The Implanon helps with my symptoms, and it's inserted into my arm, only needing to be replaced every three years, it feels less obtrusive than trying to remember to take a pill every day. Between the injections, and the monthly check ups, I haven't gotten sick in seven years.
Every once in awhile, a friend will drop the "B" word: Babies. I'll say, "Well, I'm not sure if that will be in the cards for me." Then there's the "Oh, I'm so sorry, I didn't know!" I shake off the pity and insist that it's no big deal. Some days, it's even the truth. I know that when I am ready to have children, it will be difficult, dangerous, and potentially impossible. Sometimes I try to imagine the conversation I'll have to have with the man who decides that I am the one for him. When I think of what he might say when I tell him our odds, my heart breaks. When I think of what I hope he'll say? My heart breaks. I hope that I'll have the courage to accept whatever happens or doesn't happen. I hope that the man I love will have that courage too.
It has been fourteen years since my first hospital visit, and about ten years since I was diagnosed with Endometriosis, and overall, I have to say I feel pretty great. I have moments where I panic and cry, worrying about the problems my condition may bring me in the future. I've tried to limit the time I spend surfing the web, searching for complications and risk factors. I realize that I'm lucky. It took some time, but I was diagnosed, and I am doing much better. That's why I decided to write about my Endometriosis for the very first time: So that someone out there will realize that they can be diagnosed. They can get better. I have been writing for a very long time, and it's something that I truly love. While writing can be a truly wonderful emotional outlet, most of my writing tends to be fictional. Penning something that is not only non-fiction, but very personal was very difficult, but I feel stronger for it.
As of December 2013, approximately one in twenty women has Endometriosis. As of December 2014, Buzzfeed has approximately 130 million readers. This means that today, more than 6,500,000 women may be reading this article and thinking, "I know EXACTLY how you feel." I wanted to write about my Endometriosis, not only for those who are dealing with the painful condition on a day to day basis, but for those who haven't been diagnosed yet. I wanted to write to the young woman who knows that cramps aren't supposed to feel like this. I wanted to write to the girl who is afraid and wondering why her own body is turning against her. I wanted to write to the woman who is being told, "It's probably just the flu." And of course, I wanted to write to my favorite nurse to let her know that on a scale on one to ten, my pain is at the smiley face. Can you believe that?