My Story

Everything started the fall of 2011. I had just started 6th grade and I got my period. A few weeks into middle school, my back started to really hurt all the time. I decided to ignore it because I had just spent three days at Cedar Point riding roller coasters, and I was playing volleyball. A little back pain wasn't anything to worry about. 

A few months had passed and my back pain had not gotten better. My mom took me to the doctor who told me there was nothing wrong with me. Then I went to the spine doctor who also told me there was nothing wrong with me. This pattern continued for 2 more years. I went to tons of doctors all of whom told me I was fine. Clearly I wasn't. I could barely sit without pain. The doctor decided to prescribe some ibuprofen for pain. 

Thanksgiving of 2014 we spent with family in Omaha, Nebraska like every year. We drove out there, about 12 hours in the car. I usually am the most excited person when we go. I love shopping at the Omaha mall. That year though, I had what felt like a pulled muscle down in my lower abdomen. It was very uncomfortable and on our way to the mall the next day, I made my mom take me to a ready care. The doctor there told me I had a urinary tract infection, gave me medicine for it, and told me to check in with my pediatrician when I got home from vacation. 

A week later I was at my Pediatrician's office getting a checkup. He told me he thought I didn't really have a UTI and that I should go get an ultrasound to see what was going on in my abdomen. An hour later I was waiting at the hospital to get an ultrasound. I had bad pain in my lower right abdominal quadrant. The ultrasound was terribly painful because the nurse had to push down  pretty hard to see deeper into my body. A few minutes later, my pediatrician called my mom to tell her there was a lot of fluid in my abdomen and I was being admitted to the hospital. After I was settled and the doctors were asking more questions, they decided I had appendicitis and I was going to be having emergency surgery. My mom called my dad who was up north for work and said he needed to get to the hospital as soon as he could. He drove straight there and luckily I saw him before I was taken for my final tests before surgery. I was taken in for a MRI to fully check my appendix. I got out of the scan at about midnight. At 1 in the morning, the doctor comes waltzing in, to take me to surgery I thought. He then tells me my appendix is fine and I can go home. Apparently I had a cyst on my ovary (which is very common) and it had ruptured, causing pain and fluid in my abdomen. To most people that would be a relief, except that I was in excruciating pain and he told me to go home. This pain would continue for months. 

A few months later, I was feeling worse and I went back to the ER to see what the problem was. My stomach hurt terribly and my abdominal pain was just getting worse and worse. I had my period during this (which later I found out is relevant) and so I'd been taking more pain medicine than usual. I spent that day explaining everything to multiple doctors. That's one of the worst things about the hospital. You see so many different doctors and have to tell the same story every time you meet a new one. I spent the night there with a roommate who sounded super sick. My dad stayed with me until 11. We watched Chopped for a good 5 hours until he went home to sleep. I tried to sleep, but between the girl next to me hacking stuff up and the nurses coming in every hour, and the excruciating pain I was in, I just couldn't sleep. The next day, I wasn't allowed to eat anything except clear food, which means I ate my weight in jello cups and 7-up. I had many doctors trying to figure something out. Eventually a GI doctor came in and he thought I had ulcers on my stomach due to the pain medication I was taking. He put me  on medication to help with that and told me to ease up on the pain medication. Once again, I was sent home without a serious diagnosis or pain relief. 

I missed many days of school, especially around my period, due to such terrible pain. The pain was so bad that I couldn't even walk when I had cramps and I had a few more cysts rupture. My parents kept telling me that I had to go to school, and that every girl gets their period and they don't miss school, but I was in so much pain, I couldn't stand it. I got to the point where I was hoping the doctor would find something wrong with me. I felt insane.

One day, in February 2015, I was laying in bed, a usual day for me at this time, and my mom texted me. "I have a diagnosis for you" it said. I thought she was kidding and was going to say something like "laziness" because we had talked about how I hate cleaning my room. She called me almost in tears and explained that her friend was talking about her medical condition called Endometriosis. Neither of us had heard of it before. Her friend went on to explain how for years her doctors couldn't figure out what was wrong with her and all the tests came back negative and how every time she got her period, the symptoms would get worse. We called the doctor that day and he felt so stupid for not thinking of it himself and he set up an appointment with local gynecologist. 

On the day of my appointment with the gynecologist, he said he was sure I had Endometriosis, but the only way to know for sure is to do an exploratory laparoscopy. That's where he makes a small incision in the belly button, and sticks a camera in to look at the inside of my body. Surgery was scheduled for April 24, 2015. 

April 24 came around quickly and I was in the hospital ready for surgery. The doctor told my mom it should take about 20 minutes. An hour and a half later, the doctor was finally done and my mom was freaking out. He explained that he found endometriosis all over my Fallopian tubes, uterus, bladder, and ovaries. He didn't want to burn off the cells, which is usually used to get rid of them, because I was the youngest person he had ever done that surgery on and they were in places that could cause infertility if burned. So I was left with a few incisions on my stomach and the same amount of endometrial cells in my body. When he told me that I do in fact have endometriosis, I started crying. He thought it was because I was scared,but really I was just so happy that I wasn't crazy and there really was something wrong with me. 

That diagnosis was a big step in my life, but not anywhere near the end of all of this. I started seeing a gynecologist specializing in endometriosis and she put me on birth control to see if that would help get the Endo under control. Over the next year, I became very depressed. I lost some friends and I missed over 60 days of school. I was only going to school once or twice a week. I felt like this was never ending. On top of all this Endo stuff, I was still unable to eat. I saw a doctor about this and he scheduled some tests for me. I had a scope, where they put a camera down your throat and take pictures of your throat and stomach. I also did a test where I was forced to eat eggs and toast and drink a whole cup of water. The eggs had some chemical in it so they could watch them travel through my body. I was there because I couldn't eat more than a few bites without feeling sick. I could barely eat all of that food and keep it down, but I knew if I threw up I would have to start over and I wasn't about to eat eggs again. Ever since then, I do not like eating eggs These tests confirmed that I had bad acid reflux, so the doctor prescribed a medication to help that. I'm happy to say, almost a year later, I am off the meds and my acid reflux is under control. 

I also had some pretty bad issues with my bladder. I could barely pee without crying. My bladder would spasm every time and it hurt badly. I saw a doctor about this (surprise surprise, another doctor) and she as well set up another surgery. She was going to stretch out my bladder, take a small tissue sample of it, and apply medication to it as well. After that surgery, my bladder felt so great. It was almost normal. A week later, though, I got my period and all the pain came back. It was very hard for me to deal with all of this. I was already depressed and just getting worse. Nothing was working. I started seeing a therapist once a week and I hated it. I started dreading it (although I later found a better therapist and I saw her up until September 2016). It was not helping at all. Life was just getting worse and worse. 

The next month, May of 2016, I got my period for 23 days. The only reason it stopped was because the doctors medically stopped it. I was in a lot of pain. The doctor then suggested this new medication called Lupron. It would shut down my ovaries and put me into menopause. I was all for it as long as I could still have babies in the future. The doctor said I would be able to and that we should start the medication as soon as possible. My mom got on the phone with the insurance company because the medicine costs $2000 a shot and I needed one every month for 6 months. For 21 days my mom fought insurance companies and medicine companies to get me this medication. I have never seen her get so upset before and it scared me. She was yelling at these people to get me this medication that would finally help me after 5 years of pain. On the 21st day, she told them that I was going to get the shot that day so they better figure it out because we are not waiting another day. May 29th. My dad drove me to the hospital where I get the shot, 2 hours away, and we got the shot. It was so relieving. I was finally starting the medication that would help me. June 5th I got my period again and I was scared I wasn’t going to get better. It was the last day of school so I had to go, but I couldn’t even sit down the pain was so bad, I spent half the day walking around so I wouldn't go insane. When school got out, I went home and didn't get out of bed for a week. That was my last period. 

It is now January 2017 and I have been off Lupron for a month now. I was scared that I would return to all of the pain I had before, but so far I have been feeling great. That medicine gave me my life back. I have never had so many friends, or been participating in so many things, or been so happy. Not only do I owe everything to the doctors who helped me get through this, but my parents and I have gotten closer. I have learned who my true friends are. The ones that loved me and supported me through all of this the past few years. I love them so much and would not have been able to get through it without them (thanks Abigail and Shannon, love you guys). I could not have asked for a better school either. All of my teachers and my principal all contacted me to make sure I was doing okay and I was all caught up in school. I feel so loved and I owe them big time for lessening my stress. 

I made this website for many reasons. One being the fact it is a school assignment :) but the reason I chose this to write about is I want to share my story and tell all the girls going through something similar that it DOES get better. I didn't believe anyone when they said that to me because they didn't know what I was going through and how I felt. Another reason I wrote this is because, due to all I've been through, I want to become a Pediatric Gynecologist. I want to help girls like myself. 
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