A Teen and Endo

The following is about my struggle with a disease called endometriosis. This is not meant as something to make people feel sorry for me, but as a means of helping others understand what it is like to go through this. I am mainly writing to vent and to help other young girls to know that they are not the only ones.

In October of 1998 I began having stomach pains and trouble urinating. My first thought was some kind of uninary tract infection. I was 15 when this started. I was 2 months into my sophomore school year at a brand new high school. Two weeks after the mild discomfort started, I went into the doctor. I had a pelvic exam- my first one ever. After a blood test and ultrasound, there was nothing she could find that could be causing the pain.

I did my best to ignore the pain and move on, trying to focus on my school work. By November, the pains in my stomach moved lower, became more frequent, and sharper. My mother and I researched on the Internet about possible causes for the pain. It was evident I had Pelvic Pain, but we knew there was something else. Endometriosis.

I went to another doctor and had another pelvic exam. We asked if it was possible that I could have endometriosis. She said yes, but it was highly unlikey at my age and the only way to determine if I did would be to have surgery. Yet my mom and were still convinced I had it. All of my symptoms matched the discriptions we had read. She put me on birth control. She put me on the highest level and since I'm only 5 foot 1 and about 90 lbs., it was too much for me to handle. I was constantly sick and waking up at 5 in the morning. I had horrible headaches and was very tired and dizzy.

Shortly before Christmas, I began having what I call "attacks". I continously had a burning feeling in my pelvic area on the sides around the area of the ovaries. It was worse when I'd walk. Walking with a heavy bookbag at school was not much help. I can remember walking down the hall with a hand right under my waistband to my pants/shorts putting pressure on any pain. It seemed to help. The attacks first began at night. The pain would start off like a burning feeling and continue to feel worse. Soon it would turn into cramping and sharper pains. Then it would alternate from hardly any pain to REALLY bad pain over and over again. I'd feel the pain coming and I'd scream and cry. It's a horrible not knowing why it's happening and not being able to stop it. Tylenol was just not cutting it! This would go on for hours throughout the night. Then I'd have to get up and go to school.

I spent Christmas vacation in bed catching up on sleep during the day and having attacks at night. I had been planning on studying for mid-year exams, but I was too tired. Also, my boyfriend dumped me right before Christmas break so that didn't help too much either.

A few weeks later, tired and frustrated, I began getting really emotional. Thoughts kept creeping into my mind. What if I can't have kids? What if I have to get some kind of surgery and have things removed so I can't have kids? I was so depressed. Even before all the pains I've always had this deep down fear that I wouldn't be able to have kids.

Sometime in February I had the worse attack ever. I was sleeping on one our couches downstairs because it was more comfortable than my bed. I was really late at night and I was just looking up at the ceiling thinking. Trying to fall asleep when all of a sudden I got this pain that was shooting down my back, in my pelvic area, and down my leg to my right foot. You know when you hurt your back and you pinch a nerve? No matter how you move it hurts? It was like that for about ten minutes and then I started having an attack. It would hurt really bad and then go away. The pain was so much worse. Over and over again, I'd get the shooting pain and the burning, and sharp pain near my ovaries like I was being stabbed with a crochet needle. That wasn't the worst part though. If you've ever had a Charlie Horse, you can relate to how I felt that night. Continously my right foot would fold in half and my toes would cross over each other. My mom was sound asleep and I remember yelling for her and crying, but she didn't hear me. I am so thankful that she was there for me almost every night that I had my attacks, though.

The next morning I went into the emergency room. The doctor was completely..well, mean. The nurse acted like she absolutely hated her job. The worst thing about gyn related doctor visits is not the pain from the examination, but the fact that the doctors always accuse me of not telling the truth. I'm saving myself until marriage, yet they insist that the reason I'm there in the first place is because I'm pregnant. I understand that they have to ask twice to double make sure I'm telling the truth since it takes a little while to feel more comfortable around them, but to have somebody say, "Now tell me the real reason why you're on birth control," as soon as my mom leaves the room despite the fact we've both explained to prevent ovarian cysts and to get things as normal as possible, really makes me upset. To save time, they used a catheter to put water in my bladder the reverse way instead of making me drink it. This wasn't too pleasant, but it was kinda nice not having to wait for a long time in the waiting room to get the ultrasound. They found I had an ovarian cyst that ruptured. I now know that the night I had the worst attack was the night it must have ruptured. Oh, here's something that was embarrassing. When the nurse that did the ultrasound took the clamp off the catheter, the bag spilled all over the place. I got two new hospital gowns. This time one to wear like a robe. :) (Always nice to have the extra cloth to keep covered). The doctor prescriped 800 mg of Ibroprofen. I knew it wouldn't do anything, but I was ready to get out of there.

This was about the time I started missing a lot of school. I missed three weeks in a row. Returned hoping to be cheered up on my birthday (March 6th), but ended up having an attack in one of my classes. That was not cool.

In March I went to a gyn specialist and she put me on Tylenol and Codine and later some other pain reliever. And yes! A lower level birth control. :) The pain reliever wasn't much help. For some reason it actually made the pain worse. I was told that it was probably because I was so small and it was too strong for me. I cut back to half of a pill and it caused multiple attacks. I missed more school because I couldn't walk without severe pain.

By April I had missed a ton of school, yet I was still managing to somewhat hang in there and keep up with work. My teachers just assumed I wouldn't be in school for days at a time and gave me work in advance. In between missing school, I started writing e-mails to Lindsay, my current boyfriend. April 18th we started dating! Two weeks after, I had to have surgery. He was so supportive and still remains very encouraging. I went into school to see him the morning of the surgery and he gave me a tape. He recorded "You've Got A Friend" by James Taylor and wrote to me how he'd be there with me in spirit. (As well as some other very sweet things that I will not say because it's between us). He wanted to come be with me that day, but I wasn't sure what kind of state I'd be in. (I was picturing being sick like I was after having my wisdom teeth taken out).

The surgery went well. My first thought was, can I have kids? My doctor told me I had microscopic endometriosis and said I had a cyst that ruptured (which we knew from a previous doctor's ultrasound) and had caused a pocket of blood between my ovaries. She didn't remove anything except some of the endometriosis and the blood. I had some of the endo in places that would have been too risky to remove with the laser. If I remember correctly, right on the tube that connects to my bladder. I believe that's one reason why it hurts when I need to use the bathroom. If you've ever had pain because you need to use the bathroom really bad but are forced to hold it for a couple of hours, that's what it feels like everytime I have to urinate.

So months later, here I am writing this. I've become homeschooled so I can focus on doing whatever I have control over to improve my health. Besides majorly irregular periods and a burning feeling, I'm doing so much better. I believe the surgery was part of the reason, but also I'm more emotionally stable. I have my boyfriend, Lindsay, to thank for that. He's been so supportive and encouraging this past year. My mother has, too. I'll be seeing another specialist soon.

~~~Below is something you might want to read to see if it helps. I welcome any stories or suggestions of your own. LeapFrogL0@aol.com~~

Pain occurs most often when I have:

Citrus drinks- Sunny Delight, Orange Soda, Orange Juice (but not lemonade).

Almost anything lemon flavored?

Any Citrus Fruit

Hot Tea

Dr. Pepper, Pepsi, (but not Mountain Due) } My conclusion is that caffeine affects it

Meat (but not hamburgers)

Pasta

Any kind of protein heavy food?

I'm also going to test seasonings. I get heartburn when I have pepper, so I'm going to be testing if that affects the endo, too.

I've heard that dairy products make some women have pain

Other factors:

Emotional

Sad / Depressed / Nervous / Stressed / Upset

Skipped Birth Control Pill- either because I forgot to take it or because my period is early or late and my birth control dates get mixed up

Uncomfortable place to sleep, sit, or having to stand a long time (If you have a Futon, get rid of it! I was fine for a few weeks in a row and then I slept on one and for a couple days I was in so much pain. The things are hard as a rock!)

Walking too much in one day

Some other things I do to help pain:

Use a body pillow to sleep on- I usually have pain a lot when I try to sleep. I've found the softer the area, the more comfy I get, and the faster I fall asleep. :) It also helps my back. Sometimes I put it between my knees. If I have pain no matter what position I try to fall asleep in, I've found it's best to pile a whole bunch of soft blankets on top of my bed and put the body pillow horizontally under my stomach.

Stretch and mild exercise- no jumping or walking too much on really bad days. Right now my exercise is mainly going to and from the computer for food and the bathroom, but I'm working on the exercising...

TIPS:

Before the diagnosis, the doctors will tell you it's all in your head. You're growing. It's part of puberty. (Umm..no.) You've got to remain determined. I was lucky to get a doctor that got so annoyed with me that she did the surgery just to get me to stop complaining, but it worked.

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