Life with Endometriosis!

Endometriosis month is around the corner and I am finally coming out about my battle/struggle with it. Reason for doing so is because it is very common but also very unknown. I am currently 18 years old and have been very active all my life. I used to do ballet, jazz, swimming, piano and figure skating. Now all I do is figure skating and a lot of off ice training.

I was one of girls in elementary school to start developing early. My first period was when I was ten years old (grade 5) and it was always regular up until I was twelve (grade 7). At twelve years old I started skating more often (3-4 times a week) with my friends and lessons at the same time and starting in October 2005 Halloween, I got my period for a couple of hours. Not only was it bad because it was only one day. It was bad because it was the worst pain I have ever had in my stomach. After that one day I didn't get my period until January 2006 when my next period (equally as painful appeared). I never mentioned anything because I was always told getting a painful period was normal and I always had tylonel/midol to help with the pain.

After a couple of months (before 2007) I was brought to the emergency room in the St. Justine's hospital because of sharp stabbing pains in my uterus and major cramps. At that time they gave me many different reasons of what it could be and the only way to find out would be tests.

My first test was an x-ray. I sat in the xray room for 20 minutes as they took pictures of my insides. After half an hour of developing the xrays they told me it might have something to do with my intestines. They gave me a bunch of pills to take for 31 days and see if the pain went away. If not I was going to have to go through more tests. The pills never helped but the pain went away a bit.

Nothing really happened until i was 15 years old (about a year and a half later) I came back from the Dominican Republic and I got sick for 14 weeks straight. December to march. It almost caused me to stop skating until I recovered but I stuggled through because it was my first year coaching and I didn't want to leave my students in the middle of the season. By March my colds were all gone and I was pain free and sick free for a full week.

On Saturday March 7th, it was my last skating day for the season before show practices and doing Canasta(if anyone knows that dance youd know how stupid it would be to fall) but I managed to fall really hard on my stomach. I got winded and it took about five minutes for me to be able to stand up but after I was fine. It actually didn't hurt but the shock was so intense.

On March 9th, (late monday night) I was getting up to put something in the garbage something in my right side of my stomach popped and sent me flying backwards into the chair. It took 30 seconds before I told my mom what happened and when I did she had no immediate comment.

I tried to get back up again, but my stomach was hurting way to much to straighten up and walk normally. I walked bent over to the kitchen and then I headed downstairs to get a drink and the stairs was the most painful walk I ever had. It took me about four minutes to walk down and six to walk back up and for the rest of the night I stayed all curled up because that was the only way my stomach didn’t hurt.

The next day I had a very slow day in school, I had a lot of pain and people were able to see that I wasn’t myself. I had a few teachers and most of my friends ask me what was wrong. I told them I was in a lot of pain and for the rest of the day my stomach felt like popcorn. It popped several times to where I felt worse than the night before. I  knew I'd end up having to see a doctor about it but I was putting it off.

I put off seeing the doctor for three days because I didn’t want to have to go sit in a clinic with many other sick people and getting a chance of becoming sick once again for another few weeks. On the Thursday I finally gave in and went to the clinic and sat there for about two hours only to be called in and going through some of my symptoms, I was told it was probably my intestines again and she gave me a paper to go get another set of x-rays. I knew for a fact that, that was wrong and nobody actually knew what was wrong with me but they didn't want to admit it.

It remained the same amount of pain for a few weeks, some days worse and some days better and then I went to go see my family doctor. I started to know it was going to be endometriosis  but I decided to wait and here it from a doctors mouth. I described to her about my symptoms were and the pain. She asked me several questions including if  I was sexually active, which I am not and then she just sat there. She started signing papers and then handed me them. I was now to go for blood tests, urine cultures and an ultrasound.

I started off by going for the blood tests and urine culture on an early Saturday morning. It was really early but since it was a private clinic it went by fast and we were in and out. A few days later I got a call to see the family doctor and she told me that the urine culture didn’t have a clear results and I had to redo that test before getting my ultrasound done. She also said my blood tests were fine and everything came out normal.

So I went back to the clinic to redo the urine culture and then the tests were sent back to the lab once again. This time my doctor called to inform me those tests came out clear as well and I don’t have to worry about the test anymore and I can proceed to the next phase which was the ultrasound.

I got my appointment for my test in  mid-July. I drank the recommended water and when I got there they asked for my paper. I handed them the first ‘test’ paper I had laying on my kitchen table. They later called me up and said, “I thought you were doing an ultrasound.” I said I was and they just looked at me puzzled and sent me to sit back down. About three minutes later I had a nurse come up to me and she brought me to a changing room where I had to change out of my clothes and put a hospital gown on. She then brought me to a room and made me lie on the table.

I had a few ultrasounds before that and I know for a fact that’s not how they are supposed to do it. She then put a machine over my belly and told me not to move. She snapped several pictures and then she told me I could go and my doctor would have the results in less than a week.

A week passed by and my mom and I went back to the clinic so I could have the actual ultrasound. The technician went through everything and he also showed me what he saw and said, I have several cysts on both ovaries which were probably causing the pain. My right side (side that was hurting more) was the side that had more cysts and he said when my family doctor gets the test results then she should prescribe me pills to ease the pain. Little did I know that wasn’t going to happen to quick...


I went back to see my family doctor around August/September, not sure of the actual day. She was almost 100% sure that the cysts were NOT causing my pain so she referred me to go see a gastrointestinal doctor since that was most likely the cause of the pain. I did as I was told. I first saw the doctor in October and he took down my symptoms and we had about a twenty minute chat. He told me he had three tests he could perform.
1) Upper intestinal test
2) Lower intestinal test
3) Colonoscopy
He wanted to start off with the two upper and lower tests because the colonoscopy would be for older ages and it’s probably nothing to do with it. So he signed the paper and told me to come back and see him once the test was done. My mom called the place to get the x-rays done and she faxed them my paper. They couldn’t read his hand writing so they took a guess (not to mention the doctor who gave me the paper was in the same building). They told me to get a kit (same kit as a colonoscopy) and follow the directions thinking that was the x-ray test.

I did as told the day before and when I got to the building I was in for a major surprise.  They were doing a colonoscopy when I was not supposed to have one.

When I was done they said it was the cleanest colon they’ve ever seen, I should hope so I was only 16. We went back weeks later to see the gastrointestinal doctor and he gave me another paper to go get the last two tests done. I thought the worst was over, but I was wrong.

A week before Christmas I went for the last of the two tests. I had to drink this weird powder chalk stuff and then wait until it was digested into my system. Then they took pictures as I had to drink more stuff and let me tell you it was the worst tasting stuff ever and I was more concentrated on keeping it down then what the doctor was saying. When those excruciating tests were done I didn’t hear or worry about the results until February when I had to go back.

When I went back the doctor said everything was clean and I have nothing to worry about. He then said, “We still haven’t done the colonoscopy but I don’t think that is necessary for your age.” I looked at him but didn’t say a word. When my mom and I left I looked at her and said, “we didn’t do a colonoscopy? He is the one who kept telling me the technicians said it was clean and he doesn’t remember?” She told me to let it go because I do not have to go back to see him anymore.

Later that month I went back to see my family doctor out of frustration and I said, “I need to see a gynaecologist because I am prettu sure I  have endometriosis.” She didn’t want to give me the referral because she is a gynaecologist but she did anyways. And then the last week of that month I went to see the new doctor. After going through my symptoms he said it was a high possibility but he wanted to give me a test to make sure. I accepted his test and so he told me to go on birth control for three months straight and stop it to see how bad the pain was.

I started by doing so and the first month went by okay. Then on March 29th, 2010 I was having the worst pains in my stomach I ever had. That was also after skating for four hours straight. I couldn’t stand up in a straight position and I shouldn’t have been skating after feeling the pain all morning. When I got home at 6, I was still crying because of the pain. My mom told me to stay low that night.

It increasingly got worse (not thinking it could) and so that’s when my mom rushed me to the emergency room. At first I thought it was my appendix because it was only on the right side but when I got there the pain started to spread. I took many tylonel’s which never helped and then at about 12am I was called to see the first doctor. She took many blood samples and told me to go back into the waiting room and when the results were in they’d come and get me.

We then waited until two in the morning, they called my name and we went into another part of the hospital. We sat in that room for half an hour until the doctor decided showed up. He said that my blood tests were clear and he couldn’t find anything. He told me to go home, take some tylonel and get some sleep and to come back for another ultrasound at 9 in the morning.

I did as told and went the next day for the ultrasound. We waited again in the emergency room for the results and the doctor called us in. He said the technician only did the test on my appendix but she couldn’t find it. He also stated that most people who come in with stomach are fine days after. Well this was the second time in 3 years I was hospitalized for stomach pains and it was on going for over a year now. And this point this is the first time I almost quit skating.

He then asked me what my previous doctors had said, and my mom told him I was being followed for endometriosis and the doctor said that was a large possibility. He said they can’t find endometriosis in x-rays or ultrasounds (only cysts that are a main symptom) so they’d all end up being clear (like my tests have been showing up). He told me to go see my gynaecologist and speak with him again for further doings.
Since nothing was happening I got a new appointment in Montreal with one of the top doctors. We went through some tests and asked me about any injuries that may have happened before the pains. That’s when it clicked; I fell a few days before hard on my stomach at skating. He did a physiotherapy type test to determine the pain which hurt a lot and he said I probably have a slight tear in my stomach and that physiotherapy can help with it. I need to go see my family doctor to get the papers.

That’s where the progress was starting. My mom called my family doctor and asked if she’d give me a referral but the doctor said no. My mom emailed a family member who works at the place where one of the doctors diagnosed me and told her so he wrote up a referral and gave it to her to give to me. (He didn’t want to do it at first because he didn’t want to get my family doctor mad).

So now we move on to middle of May. I had my first appointment for physiotherapy and my second appointment for the gynaecologist. I went to the gynaecologist first and he told me he wasn’t happy with the results from the test and asked me to redo it again and also let him know what physiotherapy does for me.
At physio, we did a full hour and a half tests with my physiotherapist and she said that she couldn’t do anything with my stomach but my back needed a lot of help because of lack of posture and muscles. She told me to take four months off of skating for the start to see how it goes. I took the four months off (thinking the second time I was going to have to quit) and those four months were hell and very boring.
So I was doing that I was also going through a lot personally and that made me stressed. I ended up throwing up every morning (no matter what time it was) and I was weak, tired and couldn’t move. I at first blamed that on the stress and when I went back to see the gynaecologist in September of 2010 he told me I had endometriosis.

I always knew that day was coming but when I heard the words out of his mouth it still shocked me. I couldn’t actually believe it until a few days later. He had me take the birth control pills again for three months, stop, and 3 months again.

This time while taking them I had the same symptoms as the last time I took them. The only difference was I had no stress/little at all. I took them for two months of pure torture and still throwing up every morning that I had to put a stop to it 2 months into the first 3 months. I stopped taking the pills.

Currently today March 2011 I am still off the pills but everyone is right the pain does get a lot worse as each month goes on. February I had to say was the worst month I had with endometriosis. I thought I was going to be hospitalized again. I could barely move for 3 to 4 days (even though I still had to coach and skate) I lasted like half an hour on the ice at the beginning and then I’d only go to school for 2 or 3 hours because it was so bad. My stomach felt like it was outside of me and three of those four days I took 9 doses of 2 pills per dose of Midol to relieve some of the pain. It was never fully relieved but it helped. That month also made my back worse because of the pain and my physiotherapist is even concerned.

1 year Later: I was told to take insulin shots  but my regular family doctor refused to let me do it for certain reasons. After that I found out that my Gyno quit so I have yet to meet the new one. Though; in December and January I did retry the pills. They only made me sick 4 times but the pain was so bad I was even taking extreme painkillers. The next option now is to try the vegetarian diet for 3-6 months and see if it helps the pain. I also need to get my appointment from the new doctor to see what she thinks we should do next. This disease is a mystery but I am not alone!