Wednesday, December 8, 2010

My Story









I’ve had some people asking questions about endometriosis and how I was first diagnosed. Like most women facing the realities of this disease, my story is long and drawn out. With endo, there is no simple diagnosis because the illness is still such a mystery. As a result, most women have to endure months and years of testing and drugs before the answer to the pain is discovered. 
With all that being said, here is my story. My journey is very short compared to the millions who go years without being diagnosed. I kept the details to a minimum so that I don’t “gross” anyone out. I kept the pain descriptions on the down low so that it doesn’t sound too morbid as well. 
As a teenager, I always had heavy, painful periods that lasted 10-12 days, but I assumed that was all part of being a woman. I was embarrassed to tell anyone that I hurt so bad because I was a hockey playing “tomboy”. Even in my teen years, I didn’t want anyone to think I was weak so I never mentioned the pain or weeks of bleeding. 
The first time I realized there was something seriously wrong with me was in the winter of 2006. At 22 years of age,  I had just returned from Marine Corps boot camp (yes, seriously) and my core felt like it was on fire. At first, I contributed the increase of pain (and bleeding) to the change of physical activity and lifestyle. Looking back now, I believe that the high stress environment sent my estrogen levels through the roof, which we know makes the endo rage on. 
At this time, I was training in a private training studio, while attempting to go to school. The pain became so intense that I would lay on the ground in the studio in between clients. One day, a client of mine who was also a gastroenterologist, called me out on the pain. He said that something looked very wrong with me and told me to lay down as he called a general physician. As soon as he got off the phone, he had me taken to another doctor. 

The general physician told me that the pain was caused from anxiety. He prescribed Celexa, stating that the pain would go away with treatment for anxiety and depression.  For some reason, he also prescribed Mobic to help with the pain. I left his office truly believing that the only thing wrong with me was depression. 
Six weeks later, I was still bleeding and in pain. I could barely function. I went back to doctor #1, who diagnosed me with depression, and asked for more help. This time, he ran every blood test imaginable while throwing out words like “Arthritis”, “Lupus”, “Fibromyalgia”, and “Chronic Fatigue Syndrome”. His conclusion, however, was that I needed to see a different doctor. 
So I did. Doctor #2 told me that I had a hormonal imbalance and just needed some birth control. After a couple of months following the orders of Doc #2, I was still in pain. My “periods” were lasting 12-14 days. I would have about a week of relief without bleeding. Then the two weeks of hell would start up again. Doctor #2 said I needed to take iron pills along with the birth control...and then he referred me to Dr. #3.
Doctor #3 was a Ob/Gyn. He put me on different hormones in attempts to control the bleeding as well. There is no way that I could list all the different methods we tried. I went to Mexico in the middle of all this on a missions trip. The whole time, I could not get up off the floor because of the pain and heavy flow. When I returned to the states, still bleeding, Doctor #3 did a D and C. Then, he dismissed me, telling me to give the birth control pills "more time”. 
The pain and bleeding continued for a total of 10 months. I was in Doctor #3’s office monthly, begging for some relief. Finally, in his frustration, he told me that I most likely had endometriosis. In fact, he said he was 99% sure, but that the only way we could know was through surgery. As I was crying in pain, Doctor #3 looked at me and said the words that I will never, ever forget: “Endometriosis is painful. Deal with it. You are going to be in pain. That’s life”. And with that, I decided that I needed another doctor. 
Doctor #4 was older, wiser, and nicer than Doctor #3. After tests and examinations, Doctor #4 concluded that I needed surgery as soon as possible to diagnose and remove endometriosis. However, Doctor #4 was having his own shoulder surgery in a week so he referred me to Doctor #5. 
Doctor #5 was Dr. Gorman, the man who would actually cut me open and diagnose me. After a year of tests and drugs, I had surgery #1, followed by the diagnosis of Stage III Endometriosis. Dr. Gorman put me on Lupron for 6 months, telling me that the drug would most certainly get rid of the endo. 

Lupron Injections
The next 6 months were painful and debilitating. The Lupron shots caused even more pain. I felt like someone was rattling my bones and pulling apart my insides. It hurt to walk and lay still. My body continued to hurt with everything I did. I couldn’t move, sleep, or eat without crying in pain. This was very disappointing to me because I was under the assumption that the surgery and lupron would “fix” me. I did not realize that there was no cure. Doctor Gorman was so positive about everything that I didn’t even think it was possible for the endo to come back. 
But it did. 
I spent the rest of 2008 and 2009 in stages of pain. I poured my energy into training and building up my body. I was obsessive about every ounce of food I consumed, believing that I could “cure” the pain with proper nutrition, diet, and exercise. And I did really good for a while. 
In March of 2010, my body collapsed. I had been bleeding for 4 weeks and everything shut down on me. Training for a living was proving to be impossible. I went to Doctor #6 for some help. She put me on iron supplements and pain pills. I took the iron, but refused to give into the pain medicine, believing that I could get by without it. After being in bed for a week, I returned to training in the gym, determined to “push past the pain”. 
Trying to be Strong

I did really well convincing myself and others that my health was beyond perfect in the summer of 2010. I biked through states, completing hundreds of miles on my trek. I ran atleast 80 miles per week on average. I was starting to feel strong and unstoppable, besides the sharp pains that were ripping at my tummy and pelvis. 
In August of 2010, the pain got more intense. I got to the point where I could no longer lay on my stomach. Heat became my lifesaver. I would wake up for 2-3 times in the night to take hot showers. I would sleep with a heating pad around my pelvis and a heating blanket wrapped around my entire core. 
It wasn’t until my body collapsed again in September of 2010 when I decided that I needed to go back to Dr. Gorman, aka Doctor #5. The next two weeks were spent doing tests and ruling out other possibilities. Finally, Dr. Gorman said, “We are back to square one. You have to have surgery again”. 
Ready for Surgery #2
In October of 2010, Dr. Gorman did surgery #2 to remove endometriosis and adhesions from my abdominopelvic cavity again. The disease had progressed to Stave IV and it was everywhere this time. In Dr. Gorman’s words, I had “endo out the whazoo”. Unfortunately, I also had damage to my fallopian tubes and ovaries, as they were stuck with adhesions and fused to the pelvic wall. 
The concern is no longer over the pain caused from this disease. It is the damage to my female parts that is now being addressed. Dr. Gorman put me back on the Lupron for 6 months in an attempt to slow the endo from returning and causing further damage. 
It is now December 2010, I am in my second month of treatment on Lupron. And I’m still in pain. My prayer is that God will take me through the next 5 months, offering hope to others who are suffering from this disease. No one should have to feel the pain and damage caused by Endometriosis. 
At 27, my dream of one day having a child of my own is fading. The Lupron injections are causing my bones to ache. I still get sharp pains in my tummy that shoot down my thighs. My stomach hurts when I eat, making it nearly impossible to maintain a proper diet. I am down 25 lbs in the last few months. The energy that once filled my former athletic body is long gone. I wake up each morning exhausted, asking God for the strength to make it one more day. 
That is my story. It is boring and long, I know, but it is my reality, minus all the gory details that make up this disease. Endometriosis has robbed me of the life I long to lead. I pray to God that one day there will be a cure. I pray that the damage caused to my insides will be healed. I pray for comfort. I pray for hope. And I believe that God hears me in the pain. 
Praying for a cure and hope
I believe He has reason for all of my suffering. Maybe the reason is to draw me closer to Him when I can’t physically move. Maybe the reason is to know pain so that I can know true compassion for others that are hurting. Maybe the reason is to raise awareness for this horrible disease so that other women don’t have to go to 5-6 doctors for a diagnosis. 
Did you know that the average diagnosis takes 9 years? I was lucky to go just over one year before getting diagnosed with Endo. But millions of other women are dismissed by their doctors, left without hope and in pain. 


Did you know that the only way to diagnose Endometriosis is through surgery? That means that women without healthcare and money cannot get diagnosed and treated. There is research being done right now by juneau biological in an effort to make the diagnosis easier. If we could run blood tests on an individual instead of surgery, many more women would be able to get diagnosed and given Lupron or some other drug to slow the disease. There wouldn’t be 9 years of waiting. 

I’ve ran for other causes. I’ve biked for other diseases. But I want to attack endometriosis with everything left within me. I want to fight this disease for others, for the millions around the world. 
October 2010

I’ve had enough pain. I’ve had enough of Endometriosis. Let’s scream out for some help with the millions. 

Find a cure already!

4 comments:

  1. Ahhh Honey I am so sorry. Your story is kind of similar to mine as I am now on Doctor #5. It is so stressful and frustrating when Dr's dismiss the endo pain as something that we have to deal with. We need a cure for this horrible disease.

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  2. I read your symptoms and it's as if they were my own. It's assuring in some way that we are not alone. There are many of us out here and one day we will live a life with less pain and less 'extra' symptoms that this disease brings. Sending you a big virtual hug because I would be squeezing you in person right now if I could. ***HUG***

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  3. I hate hate hate hearing about doctors brushing people aside. I am so incredibly thankful that I only had to go through 2 doctors before finding someone who listened to me, but that 7 months I spent with doctor number 1 still haunts me.

    Uggg! Is it bad if your story just makes me angry? Lots of love to you my friend...

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  4. Thank you for sharing your story. I'm amazed at how much you've endured and overcome.

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