First Surgery

My first endometriosis ablation was on this date.  I had just turned thirteen.  It was supposed to be earlier this summer, but I broke both bones in my wrist.  My doctor wanted to wait until my arm wasn't in a huge cast anymore before he did the surgery.

He removed several places of endometriosis, but thankfully my ovaries, fallopian tubes, and uterus looked good.

Here are before and after pictures.

First Visit to the Gynecologist

3/31/14
Today was my first visit to a gynecologist.  I am only twelve, and I didn't expect to see this type of doctor until I was ready to have kids.  However, the cool thing about is that this is the same doctor that delivered me and my brother.

When he asked me certain questions, he would slip up and ask about "intercourse".  I did not know what that meant at the time, but my mom told me after the appointment.  I guess he doesn't see a lot of girls my age.

After hearing that I started my period at the age of nine and then stopping about three months later, he decided to try putting my on birth control to regulate my periods.

4/2/14
I had a 3D transabdominal ultrasound today, but nothing turned up abnormal.  I had to drink a lot of water before the appointment.  Apparently, I drank too much because the technician said my bladder was too full.  She made me pee just a little bit so that she could do the exam.  Do you know how hard that is when you REALLY have to go?

5/28/14
After answering a lot of questions, my doctor decided to schedule a laparoscopic surgery for the end of June so that I don't have to miss my soccer and volleyball camps.

6/17/14
Today was my pre-op appointment.  When the doctor saw my huge cast (I broke both bones in my wrist at soccer camp on 6/12), he decided to postpone my surgery until the huge cast was off.

8/25/14
The birth control that I was on made my periods start back pretty quickly, but we noticed that I would throw up more the week before and the week of my period.  My doctor decided to switch me to Quartette so that I only have a period every three months.

My Background Story

(I wrote this in February 2016, but I backdated it so that it would be the first entry.)

In my life I have been through infant reflux, asthma, chronic urinary tract infections, and environmental allergies. I thought all of that stuff was really hard and brutal, but I was mistaken. Halfway through fifth grade I realized that everything could be way worse than all of those things. I started throwing up profusely in the middle of that year. At first we thought it was just a virus going around my classroom, but we were completely wrong. I missed approximately thirty days during the second half of that school year, and this made me feel quite different. I would miss school for two to three days in a row. Then I would go back to school and feel very disconnected and awkward because I missed so much. I was very blessed to have great friends that would check on me when I wasn’t at school and make sure I was okay. I think if I didn’t have those friends I would have had a much worse fifth grade experience than I did. The best thing was that my mom worked at the elementary school that I went to, so it was easier for me to get taken care of quickly when I was sick. I was able to go into her classroom and lie down on her carpet to collect myself for a little while, and then I would go back to class and finish out the school day. I hated lying down in the office when I was sick because I felt like people that would walk into the office would think, “Oh there is that girl who is always sick.”  I felt like some people would think I was faking just to get out of going to school, but that was not true at all—I loved school, my friends, my teachers, and I loved to learn.

My pain was progressively getting worse.  My back, stomach, and head hurt all the time. It became so unbearable it would wake me up at night. A couple months after the pain started, my parents took me to the ER at the Children’s Hospital because they realized that the symptoms were getting worse. We all wanted to know what was going on with my body. I was tired of being in so much pain and discomfort, and I know my parents were upset that they couldn’t fix everything and make it all better for their little girl. We were in the ER for a couple hours and I had several scans, blood tests, and x-rays done. After all of those uncomfortable tests that I had done that day, the only result that we got was that I didn’t have a brain tumor. Of course, I was relieved that I didn’t have a brain tumor, but I was also disappointed that I didn’t find anything else out that was potentially wrong with my body.

The ER doctors recommended that I go and see my pediatrician, Dr. Berry.  He referred me to a gastroenterologist. The GI doctor that I was referred to did not care about me, my symptoms, or what was wrong with me at all. I feel like all he cared about was getting paid and diagnosing me with what he wanted to—not with what was actually wrong with me. This doctor would prescribe medicines to me without any consultation at all, so I had no idea what I was putting into my body. My mom would look up those medicines to see what they were, and one of the times she called his office they actually answered. My mom asked why I was being prescribed all the medicines that I was being given. My mom talked on the phone with the nurse for a little while and in the end she realized that this doctor just decided not to put one of my most important symptoms on my chart. We realized that he did not care about me, so we went back to square one. 

We returned to Dr. Berry and told him everything that had happened. Dr. Berry hugged me and was very apologetic. He then sent me to a different GI doctor. He said that he didn’t send me to this doctor in the first place because most people didn’t like his bedside manner. I didn’t care if he had the worst bedside manner in the world; it would be way better than my previous experience.

When I went to Dr. D a couple weeks later, I knew he was the perfect doctor for me. I knew this because I loved his silly ties, cowboy boots, how he wanted to talk to me more than my parents, and how he unknowingly stroked his goatee while he spoke to me. When I went to see him for the first time, it was in the middle of the summer after fifth grade.  He listened to me and said his goal was to cut my pain, vomiting, and diarrhea in half before I went to middle school. He told me he couldn’t promise me that all my symptoms would be completely gone before sixth grade, but he would do everything he could to help me.

Dr. D’s first step was to take me off the high dose of Hyoscyamine and put me on a lower dose of Amitriptyline and Ranitidine. The hardest part of the treatment was that he put me on a very strict diet. I was no longer supposed to have fried, fatty, or processed foods. I also couldn’t have chocolate, caffeine, or carbonated drinks. By the time sixth grade started I had lost sixteen pounds due to the new diet, and I was now only throwing up a few times a day instead of six to eight times.

Sixth grade was a very tough year for me because I was dealing with a transition to middle school along with my illness. I was glad to have my friends, family, church, and teachers to help me through this. But, sports were probably what helped the most.  Playing volleyball, basketball, and soccer drove me to go to school every day and push through my intense pain so that I could participate. I continued to have a 504 plan and be on intermittent homebound. I saw many doctors during this time.  Some of them helped, but some were just stupid.  I did find out that I had thirteen food allergies. Having all these food allergies made me feel even more different from everyone else, and it made me not be able to eat things that I loved to eat. In middle school I went to a bunch of different doctors, got many tests done, and I still didn’t get any results.

My mom and Dr. D brainstormed about everything that could be wrong, and endometriosis was always on the bottom of the list. They decided that I have been to so many doctors already I might as well go and see a gynecologist. So, I went to see Dr. Mullin, and he ran a couple blood tests. Dr. Mullin talked to my mom and I about all of my symptoms, and endometriosis came up. He said the only way to know if I had it would be to have surgery. We eventually decided that having the surgery was the right thing to do, so we scheduled the surgery for June. However, I wasn’t able to have the surgery then because I broke both of the bones in my arm playing soccer, so we rescheduled the surgery for July.

The day of my surgery I had mixed emotions. I was anxious because I was having a surgery, and I was excited that I might finally find out what was wrong with me. I could tell that both my parents also had mixed feelings about the surgery. After the surgery was over Dr. Mullin came into our room and told us that I did have endometriosis, and that it had been growing inside of my body for about two years, which meant it could have started when I was eleven years old. He said that he cut all of the endometriosis out of my body. After he told us that it was out I could tell that we were all relieved. Unfortunately, the results do not last forever. For most women, endometriosis continues to come back until they get a hysterectomy.  

I was better for about six months after the surgery, and then I started having really bad pain and intense vomiting again. Dr. Mullin had told me that I would be able to tell when the endometriosis was back because it would be really bad pain and because it will always come back. I realized it was back in the summer before ninth grade. During that same summer I was in the middle of trying out for my high school volleyball team. I tried out for the team and made it, but during tryouts and during the season I had to do different exercises than my teammate because of where my pain was located. I couldn’t put too much pressure on my stomach. I still would leave practice to go throw up, and then I would come back and finish the practice. I would throw up six to eight times a day, but I would still go to school, play sports, and attempt to act like a normal kid.

I had just turned thirteen when I had my surgery. Now I am going to turn fifteen in about four months, and my endometriosis is back. I was waiting for a new medicine to get approved by our insurance. This medicine is very scary and dangerous because of its side effects. The medicine was a shot that would have controlled my endometriosis, but was so dangerous that the second time I got the shot the doctor would have had to be present. I got a letter about a week ago that the shot was not approved by our insurance because of my age. I am quite relieved that the medicine didn’t get approved because I was very scared of the side effects. I am not upset about not getting the shot, but now I want to have the surgery to get the endometriosis out of me.

Most girls my age are stressed about their clothes, hair, and make-up. Meanwhile I am stressed about where the nearest bathroom is and if my breath smells like vomit.  I want people to know that if they are in pain, sick, or just feel disconnected that they just need to never give up hope. They need to find people that love and care about them, and most importantly find and keep their faith in God. If I didn’t have my friends, family, and faith to depend on then I don’t think I could’ve ever gotten through four years of this.