It controlled my life starting at age 11, even though I didn't know what it was. It dictated so many things- when I could eat, when I could leave the house, when I could get out of bed. I missed so many opportunities; so many missed family and social gatherings, missed classes, failed relationships from so many last minute cancellations and social withdrawal. No one believes that you are sick when you look "normal". They certainly don't believe that you cannot move without feeling extreme pain, or that when the pain comes it is actually a relief. That you didn't feel safe unless the pain was there. It had become a normal part of me and my everyday life. I sought medical help over and over, but was repeatedly told that it was "just bad cramps". My life continued to shrink until one day the pain became so powerful that I could not move. I went to the doctor and after multiple tests, I was scheduled for emergency surgery the following morning.
Endometriosis. Stage 4. I was told by my surgeon that if I ever wanted to have children, that I was running out of time and should "get pregnant right away". I was 23 years old and the first thing I was told by my surgeon when I woke was that "You have the insides of a much, much older woman." They had removed multiple cysts- one being the size of a grapefruit and another the size of an organge. They had attempted to remove layers of endometriosis, lesions, and chocolate cysts. The pain after the surgery was extreme and it took weeks before I was able to eat again.
I had been experiencing common symptoms of endometriosis since I was 11 years old- for 12 full years before I was finally diagnosed after having an emergency sugery. No one knew, including the multiple doctors I'd seen, that I was experiencing common symptoms of endometriosis. I had trusted the doctors and now it had become normal to have frequent episodes of extreme pain- to lie on the bathroom floor and wonder if I was dying. It was normal to sleep all day and all night. It was normal to miss college classes and cancel on friends and family. It was all normal. I had no idea that my life, at that time, was completely revolving around my endometriosis and it's affects on my every day functioning.
After my first surgery, I underwent a multitude of treatments and medications- including my first episode of medically induced menopause. I would sit in my college classes, when I was able to attend, dripping with sweat and covered in red, blotchy rashes. None of the treatments or medications were able to stop the progression. One year later, I underwent a second emergency surgery. The doctors could not explain why none of the treatments had worked. I missed my college graduation ceremony because I was having my second emergency surgery. I was told that they had been forced to remove one of my ovaries, that the damage was so severe that I would not be able to bear children. I was 24 years old.
Next, there were more treatments, more medications, another surgery, several specialists, more tests. Yet, over the years, there was more and more bleeding. Until it was normal to bleed everyday. There was bloating and weight gain, severe intestinal issues, severe fatigue, and anxiety. The specialists insisted that everything had to be normal, that there could not be any more cysts or lesions- the medication would not allow them to develop.
Eventually, I couldn't pretend anymore. The pain was constant and I started having difficulty going to the bathroom. I was having difficulty functioning at work and my marriage was deteriorating. The surgeon agreed that I should have a hysterectomy, and now that I had reached 30 years old, they were comfortable in doing this. When I woke from surgery, I was told that my organs had been "glued together" by the endometriosis and that they had then attached to my back pelvic wall, which what was part of what had been causing the extreme pain. Now that I had undergone a full hysterectomy, I began treatment for menopause at the age of 30 years old.
I am now 36 years old and still have endometriosis. There is no cure and the endo is able to spread- even without menstruating. I am unable to take hormones to balance my 36 year-old body that no longer has ovaries, because taking hormones actually caused the endo to spread to my bladder.
What has this personally meant for me? The harddest part wasn't the pain or watching my body change. It is the missed opportunities and broken relationships caused by the disease. The missed birthday parties and baptisms, the going to bed at 4pm every day, the lost friendships from not being able to explain what was wrong and why I was withdrawing, being seen as flaky or irresponsible from colleagues and classmates. Telling the man that I love that I am unable to bear his child. Those are the hard things.
Yet, my life is a blessing. I have survived all of this. I am happy with myself and my body- scars, rolls, and all. I am able to use my experiences to encourage others to seek help. I don't want anyone else to wait as long as I did to be diagnosed, to attempt treatment when they are so far along in the disease. I look at my fellow women, particularly the young and undiagnosed, and I demand a cure for them. A cure for their pain. A cure for this disease that affects every aspect of your life yet is invisible to others!
This is why I have decided to commit to raise $1,000 for The Endometriosis Foundation of America and to run in a 5K as part of the "Rock 'n' Roll Marathon Series" in Washington DC on March 17th, during "Endometriosis Awareness Month". My birthday is actually on March 22nd and I can not think of a better way to celebrate, than by passionately sharing my knowlege for this cause!
Thank you for reading my story!!
ENDOMETRIOSIS FOUNDATION OF AMERICA wrote -
The [Endometriosis Foundation of America](https://www.endofound.org/) is thrilled that athletes from across the country will be running with Team EFA over the next year! They will be raising endometriosis awareness, and supporting endometriosis education and research as they train, fundraise, and eventually cross the finish line! Click their pictures below to learn more about our team members and donate to their campaigns! If you want to [join the team click here](https://www.endofound.org/2017-18-rock-n-roll-marathon-series) to learn more!
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