Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

My fight for reproductive rights.

by Susan Burle
(St Peters Missouri US)

I am thirty years old and I have struggled with endometriosis for over half my life. My first experience with pelvic and abdominal pain was at a very young age.

My mom and dad owned a company and she would bring me to work with her. Sometimes my stomach would hurt so bad that she would take me to the closest convenient store to get Ibuprofen or other over the counter drugs to ease the pain (I was around eight at the time). This pain would carry out and stregthen throughout the years.

When I started high school, I felt more alone than ever. I started going to the doctor for my female issues when I was fourteen and a half. The physician suspected endometriosis but I was told the only way to be sure was cutting me open.

That was a terrifying way to tell a fourteen year old about her health. My family never understood because my physicians told them it was normal for me to have all of the pain.

In 2006 I began to see another Obgyn. She had x-rays taken and they showed I had several cysts, but she let me get really sick. She told me she did not run a free clinic and I would have to come up with the money or she could not help.

I would lay in bed when I was not at work and cry myself to sleep. The day after Christmas 2006, I was rushed to the emergency room for abdominal pain. When I got to the Emergency Room most of the people in the ER had flu symptoms. However, I was crying because of the pain.

The patients before me were asking the hospital staff to let me go before them but they refused. I know why. I did not have insurance. So, I sat in the lobby for three hours only to sit in a patient room for another three hours.

When the Physician finally came in he said (with out any tests or x-rays) I think it is just endometriosis. Ding, Ding, Ding, tell him what he has won. No joke, that is what they have been telling me since I was fourteen and a half!

He said I do not think we need to run any tests or have x-rays taken. We will send you home with some narcotics. He did what he said; he sent me home with narcotics.

Two months down the road after suffering horrendous pain, pain that was crippling, and all I could do is cry and scream; I had an emergency surgery. I almost died because of their unwillingness to provide a service, that in the preamble to the constitution says it is my right to health.

I had a cyst the size of an apple rupture and ripped my ovary in half. I bled internally 24 hours before I was treated. My memory is limited on that situation, but what I do remember is being at work and dropping. I barely made it to the break room before the screaming pain set in. I was blacking in and out. The rest blurrs in and out. I have never felt that kind of pain before. I thought I was dying.

I started recovering from that surgery and during the last stretch of the recovery I started feeling the pain again. It would come and go but it was absolutely horrendous. I was in and out of the emergency room again.

I did not have insurance, so I went to a state run health clinic. They diagnosed me with a uterine infection. They put me on antibiotics for two months straight, along with two different very well know naroctics.

I was drugged and scared and unaware of what exactly was going on. Finally the pain became so unbearable that I called around to find anyone who would see me, I did find an Obgyn. He decide that surgery was the best for me at the time, but he put it off because I could not afford it.

So, one night while my friend and I were working I started having dizziness and when I tried doing a crunch I almost passed out. Shortly after the pain grew so bad I could not stand it. So, I called the Obgyn, crying and begging him to help me. He said meet me at the ER and I will do the surgery.

When he did the surgery he found that all my female organs were in one massive ball wrapped around each other. I was dying once again. I was bleeding internally from endometriosis and had a chocolate cysts bigger than my uterus full of blood.

Also, there were adhesions everywhere: on my gallbladder female organs etc. After I woke up from the surgery they told me they could not get my right fallopian tube open. He warned me that if I would get pregnant and an egg was released from that ovary, I would probably die. This surgery was in 2009.

The next surgery would be in 2010. After the recovery from the surgery in 2009, I began to have horrendous pain again, more crippling than ever. When I went to the bathroom I was almost blacking out from the horrific pain. I would scream in the bathroom room and my mom would check on me to see if I needed to go to the ER.

Most of the time I would try to deal with it because I was so tired of physicians turning me away because I had no money. Also, a lot of the physicians I saw, even with having the previous surgeries sent me away with only narcotics to shut me up and telling me the pain was normal.

However, once again I was in and out of the ER. I begged them to help me but all they could do was send me home with naroctics. I started a new job and I was able to make it through the first 4 months, but shortly after I had to take a leave of absences becasue I was so sick.

I found an Obgyn again who would see me but all he would do was write me a prescription for a laxative. She said I cannot do anything else for me. So, she sent me home with a prescription for a laxative. At that moment I knew I was going to kill myself. My mom was with me asking me to let her drive becasue I was such an emotional reck. All I could say on the way home was I cannot do it anymore. It is too much.

I envisioned how I would kill myself on the way home. I would either hang myself on the tree by my dads work shop or shoot myself with my dads pistol. It was like a movie playing in my head the whole ride home, seeing myself fall off the stool and hang there until there was nothing more, and seeing myself crying and putting the gun to my head and pulling the trigger.

Fortunately, my mom knew that would be my fate if she did not act fast. She could see how tired I was and how out of control my disease was. She immediately called family to help me. They found me a OBGYN ASAP. The Obgyn was willing to see me the next day, so I held on to an inch of hope.

This new Obgyn was a miracle from the day I started seeing her. She actually sat down and explained what this disease was doing to me. She actually listened to me cry for almost an hour. She began running tests immediately. She hugged me and told me she would help me. I felt I had hope again.

She finally determined that surgery was neccessary, but she also decided that I needed a treatment program that would work for me. I had taken many types of birth control pills and nothing ever worked.

So, she decided lupron would be the best for my treatment. She knew I could not afford the medication so she had installed a program for women who could not afford it.

Unfortunately they pain became at its worse. I spent the entire summer in bed from crippling pain. Then a few weeks before the surgery I began to throw up and having such bad pains, all I did was cry and sleep. I barely ate. I called my Obgyn crying. I told her I could not take it any more.

After the surgery I was told I had severe stage four endometriosis. I had a growth growing in my right ovary. My Obgyn said it would have most likely killed me if it had ruptured. She also found damage on my bowel,and surrounding areas, and internal bleeding. Once again, my life was threatened.

Then shortly after the surgery the pain came back. I felt miserable. I felt this disease was going to kill me. In 2011 I spent that whole year missing out on my life. Yes, I went back to school and work but I suffered through every waking minute of it.

At this point I realized I would never be cured or find a treatment to keep me health. I would spend days at a time laying in bed praying that either God would take me or heal me, but I knew I could not continue this process again.

The St Louis Post did an article on this new physician who was suppose to be at the top of his game. They over sold him by a lot. He did a hysterectomy in may 2012. He found several large nodules that fortunately had not turned to cancer yet.

However, he conserved my left ovary only and it left me open to endometriosis growing back and unfortunately it did. A month after the surgery I was in the ER four times and hospitalized for two days. The surgeons co works were checking up on me. My stomach was swollen, my crutch was swollen, I was running fevers, I was throwing up, but they told me in the nicest way possible it was in my head. I am guessing they thought I was going to sue them but in reality I just wanted them to figure out what was wrong.

I now suffer with blood in my urine, pelvic pain, and constant fatigue. I am suppose to see a urologist for the blood in my urine (they are afraid it will turn to cancer), and take injections for hormone suppression, and continue preventive care. However since Missouri Legislatures passed SB749 bill my insurance capped my spending and told me they would not renew my policy or pay for any treatments from the summer.

So, now I am left with a grim future once again. I am not giving up, I am holding informative meetings at my union hall and St Peters library. Fight for our reproductive rights.
I have a petition on change.org - go to "browse"
then in the search box type "women"
on the sixth page, the third from the top is my petition (it has a picture of purple irises) Women for Reproductive Rights.

Please sign it and help me fight for women like myself, who struggle to live everday. Sign to save my life and others whom have severe reproductive diseases.

Sincerely a woman fighting for her right to live.

Susan Burle

Join in and write your own page! It's easy to do. How? Simply click here to return to How endometriosis affects your life.

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