First day of seventh grade
It all started when I was only 12 years old, almost exactly 9 years ago. It honestly feels like a lifetime ago. Until I started writing these posts, I didn’t realize how long it had been. Nine years. Nine years of being in pain and unable to trust my own body.
It’s not a positive thought in the slightest, but it dulls when I think about ten, twenty, thirty years of being in pain. Medicine is constantly evolving, and new discoveries are always being made. Hopefully, in time there will be a cure or a treatment. Until then you will find me fighting and praying for answers.
My story started in March of 2011. I was a naïve little seventh grader, whose biggest worry at the time was getting ready for a Battle of the Books competition. I thought I was as normal as could be. I was pretty healthy, had a good group of friends and was content with life.
When I went home early on a Friday afternoon because my stomach was upset, I thought nothing of it. It was March, which meant flu season. My dad picked me up and that was that, or so I thought.
The next day we had planned to paint three rooms in our house, my bedroom, one of my brother’s bedroom’s and our dining room. I loved (and still do) helping around the house with projects. Painting was something that I actually enjoyed, and I had been looking forward to helping. To put things simply, I did not help at all that day.
I kept trying to help, but I would last about ten minutes before the pain in my side would become unbearable. Stubborn little me kept trying to help and my parents kept sending me to their room to lay down, because mine smelled like paint.
Over the counter pain medications did nothing to help. I wasn’t running a fever. I wasn’t throwing up. I just felt horrible. I had never experienced such pain. My parents tried giving me a heating pack and that did nothing. I had no appetite because of the pain, which also meant I was not staying hydrated, something that I still struggle with.
That night I slept on an air mattress in my second brother’s room, because mine still smelled too strongly of paint for my parents to allow me to sleep in it. I barely slept that night because of the pain. No matter which way I laid, I was in horrible pain. I honestly thought I was dying.
When morning finally came, I begged my parents to do something. I remember at one point lying on that mattress and just screaming that it hurt. My mom decided that enough was enough and that she was going to take me to the walk-in-clinic. We were all nervous and for good reason.
We thought that it could be appendicitis. The pain was only on my right side, right where your appendix is. That August, my youngest brother had emergency surgery because of appendicitis. If the surgery had been even an hour later, we might have lost him. I think we all were nervous that history was repeating itself. Yet, there were clear difference between the two of us. He had been sick for over a week and his symptoms were nothing like mine, except for the pain.
Even so, my mom took me to the doctor. I was seen by an intern before the actual doctor. The intern was trying to get practice, and I didn’t care enough to say no. He spent about five minutes with me before the doctor came in and came to the conclusion that it was not appendicitis. The main doctor disagreed.
They order a CT scan with contrast. Unlucky little me had already had a CT in life, but not one with contrast. That meant I didn’t have experience drinking the horrible contrast liquid that you must consume before entering the machine.
As a child, I really struggled to stay hydrated. I just didn’t like drinking water. So, you can imagine my excitement when I was presented with two water bottles full of a nasty liquid that I needed to consume. The doctor made me drink an entire one in his office before he let me leave. During that time, I got my blood drawn for the first time, which was a little scary to be honest. Needles were a phobia of mine as a child, so it was unpleasant to say the least.
We had time to go home in between the doctor and the scheduled CT. The CT was at another location, a brand-new medical center across town. That meant telling my dad what we thought was wrong and my parents trying to bribe me to drink the awful liquid that would give the doctors the answers they were looking for.
Walking into the medical center was nerve-wracking. I was still feeling like death and now I was scared that something was seriously wrong. All I could think was, “what if I need to have surgery?” I couldn’t imagine anything worse than that.
I will be the first to admit that I have some childish mannerisms. In seventh grade I had even more. One being, I brought my blankie with me to the medical center. It was shoved up in the sleeve of my puffy winter coat, hidden from the world, but close enough to bring me comfort. I looked even more like a marshmallow than normal because of it.
We had to check in at the main desk and I got a fancy medical wristband with all my information on it. Then we had to sit in the waiting room. I held my coat close, secretly rubbing the silk edge of my childhood blanket for comfort. My head was in my mom’s lap and I was laid out across a small couch.
Then my name was called. My mom walked back with me as far as she could, but all too soon for my liking we were separated. They took me into the CT room and had me sit next to it, while they gave me an IV. Yet another needle…
Finally, the test started. I knew to hold still, but pain makes that difficult. I stayed as still as I could, but I would bet money that they had more than a few unusable images. The pain spiked again while I was in the CT machine and it took all my willpower not to cry out. I’m amazed that I didn’t… or maybe I did, and I just don’t remember.
It didn’t take horribly long, but it was long enough to me. They led me back out to my mom who was waiting with arms open wide. I once again curled up in her lap, not paying attention as the nurses told my mom that a doctor would be calling her shortly to take about the results. I never noticed that they handed my mom and old looking phone. It wasn’t a cell phone, more of the block-like phones that you had at home (back when you still had landlines).
We didn’t have to wait long for the doctor to call. I was in too much pain to really care what he said. I knew my mom would tell me anything that I needed to know.
I wish I could remember the look on her face when they told her or the sound of her voice when she told me. Yet try as I might, I can’t. I can clearly see myself laying on the couch, my head in her lap. I can see the phone that they gave her like it was yesterday. Yet I can’t remember her reaction.
She stayed on the line for a couple minutes, asking questions and figuring out our next steps before she told me what was going on with my body.
I had an ovarian cyst… and it was in the process of rupturing.
I had no clue what that meant, not really. I hadn’t gotten my first period yet, so no one had thought to think of ovarian cysts. Also, what doctor’s mind goes to ovarian cyst when they are presented with a child with horrible pain on the right side?
Due to the fact that the cyst was already rupturing, there was little that they could do. They sent me home with a prescription for pain meds and instructions to take it easy. I got a note saying that I shouldn’t go to school for a while and that was it.
I remember being upset that I wouldn’t be able to go to school. I was supposed to compete in a Battle of the Books competition that Tuesday. There were only two people on our team, as opposed to the standard four. I couldn’t bear the thought of leaving my partner to compete by himself.
That week I stayed in bed, letting my body heal as much as it could. There were moments that the pain would spike and there were moments that it was almost manageable. I never would have guessed that my new normal would mirror those spikes.
By some miracle, my school had managed to get an extended deadline for the competition. I went to school on Friday and competed (it was an online competition). We ended up placing in the top twenty in the state, which I was pretty proud of.
Telling my friends what was wrong with me was another story. No one had ever heard of an ovarian cyst, why should they?
Almost exactly one month later I got my first period. Thus, started a cycle of painful periods that would last for years before someone would really start to take me seriously and try to help.
Looking back, it’s so obvious what caused my ovarian cyst. While Endo does not cause cysts, it is corelated with an increase in cysts. It wasn’t until years later that my mom and I put two and two together.
Three centimeters. Three centimeters of tissue that wasn’t supposed to be there changed my life forever, setting me on a path that I would never have chosen. Three centimeters.
MRC