For those of you who are not familiar with my experience with Adhesions Related Disease ( ARD ), I have lived with the chronic pain of adhesions for 31+ years. All because of a laparotomy I had in February1970!!! Throughout all of those years I had so many disappointing experiences with so many doctors; and I had to endure so many invasive, painful and unnecessary tests!! Ever since that time I have searched for information that would offer me a clue as to what was the cause of my constant pain!
In 1996 I learned about the Endometriosi Association; and that I had to become a member before I could purchase their educational materials. So I became a member and purchased and read almost everything they offered. As a result I discovered a clue that eventually led me to the endometriosis specialist, who performed my diagnostic laparoscopy in August 1997. What was the clue? The only way that endometriosis can be diagnosed is by a diagnostic laparoscopy!! I had never been offered a diagnostic laparoscopy!! If you want to read about the experiences I've had, you will find one of my stories on the Adhesions Quilt and another story in the Archives of the International Adhesions Society. I have included that website here:
* Undiagnosed chronic pain finally diagnosed as adhesions in 1997... 27 years later!
http://www.adhesions.org/forums/ADHESIONS.0006/0220.html
My surgeon had a very difficult time proceding with the surgery; because he discovered that he had to lyse adhesions before he could even perform a diagnostic procedure. Was my diagnosis endometriosis? No, it was ADHESIONS!! I had never heard of adhesions before!! For twenty-seven years I had never seen the word, adhesions!! Then ten days after this surgery, I felt the return of adhesion pain. I was so disappointed...so disappointed!!
It was my ignorance as a health consumer that spurred me on to learn as much as I could about adhesions and anything related to adhesions!! We signed up for the Internet and my education about Adhesions Related Disease ( ARD ) actually started in the fall of 1997; and I continue to learn as much as I can about ARD!!
As a result of my research and my personal experience, I have developed a pretty good understanding of this difficult-to-diagnose and difficult-to-live-with diseaser; and I have decided to make this information available to everyone, who makes use of the Message Board.
If you ( or someone special in your life ) suffer from adhesions, it is very important to learn as much as you can about Adhesions Related Disease!! ARD is so poorly understood by the medical profession!! There are too many doctors, who do not believe - or won't admit - that adhesions can cause pain!! With the knowledge that you will gain by learning about Adhesions Related Disease, you will be able to recognize if your doctor has the same understanding about ARD as you do. If not, then it is time for you to look for a doctor who does.
Knowledge gives you strength.
Knowledge gives you courage.
Without courage there can be no progress.
Without progress there is no solution.
You will learn that there are two adhesion barriers, which have been approved by the FDA for use in open abdominal surgery ( laparotomy ) - INTERCEED and SEPRAFILM. Only an informed surgical patient would know that these adhesion barriers are available. A surgeon, who isn't aware of adhesion barriers, will NOT have the skill and experience, which are needed to apply adhesion barriers correctly.
The purpose of an adhesion barrier is to help minimize the formation of adhesions, which start forming immediately after the conclusion of a surgical procedure. It is our body's attempt to heal itself that causes the formation of adhesions.
Unfortunately, neither Seprafilm nor Interceed are 100% effective. Each barrier has its own problems. Seprafilm is very difficult for the surgeon to apply; because any moisture will cause Seprafilm to become very sticky. Interceed will not be effective, if any blood is left in the abdominal / pelvic cavity. Consequently, many of the best surgeons have made a decision to NOT use either of these adhesion barrier products!!
INTERGEL is a gel-adhesion barrier, which continues to be in clinical trials. Intergel has not been approved by the FDA for use in the United States. However, Intergel is being used by surgeons in surgical procedures in Canada, Europe, Japan, the Middle East, and South Africa. Just knowing this, gives us a sense of HOPE!!
I have tried to include the most important information about adhesions on this list of websites. After you have read each of these websites, you will have completed a "crash"or "mini-course" about Adhesions Related Disease. EDUCATION IS THE FIRST STEP!!
1.) Take Charge": The Five Cardinal Steps
http://www.epler.com/s_steps.html
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2.) The Extraordinary Story of Dr. Roberts
http://www.epler.com/s_epsd1.html
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3.) What You Don't Know Can Hurt You: Knowledge Is Power In A Doctor/Patient Relationship
http://www.obgyn.net/women/articles/comfort/comfort006.htm
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