What an opportunity for Oprah to hear about adhesions! I have sent through my story and I have cut & pasted it here so that you can see how I feel about researching health issues on the internet. PLEASE take the time to answer the survey....we need to get the Adhesions story out into the public arena NOW!! cheers & hugs, Jo
I have used the Internet to find out more about women's health issues since 1999. After suffering from painful heavy periods etc for a number of years, my doctor said it was time to have a hysterectomy. I used the Internet to look at the arguments for and against this procedure and the reasons why this procedure is performed. During this research I found that I fitted many of the symptoms of Endometriosis and wondered if this disease would be discovered during my surgery. The surgery ended up being a nightmare, as my body was full of adhesions. None of my research mentioned adhesions apart from their association with endometriosis. My uterus, abdominal wall and bladder were completely glued together with adhesions and the surgery took five and a half hours. I lost a lot of blood and required 2 units of blood as a transfusion in the days following the surgery. Five days later I had to undergo further surgery as several large loops of bowel had pushed through the muscle wall and the internal stitching of my wound came apart. It required another surgery of one and a half hours to repair this damage. I now have "mesh" across my abdomen to help reinforce my muscle wall. I didn't recover well after these surgeries and have suffered considerable pain since 25 February 2000. After numerous visits to specialists and doctors I was told simply that it was traumatic surgery & that I should expect it to be some time for me to feel "normal" again. I started again to research adhesions on the Internet and discovered that I had not been told that as a result of the four c-sections to deliver my four daughters had resulted in massive adhesions. These adhesions DO NOT show up on ANY scan or test, including blood workups etc. So each test or investigation always produced the same results - There was nothing wrong with me. I continued to research and became more confident and assertive with my doctors and eventually was referred to a pain specialist. This specialist agreed with me that there was indeed something amiss, but it was out of his field. He referred me to a gynecologist.
This gynecologist was able to establish that things weren't as they seemed and my ovaries were not where they should be. He advised that the best way to diagnose my problem was via a laparoscopy. This was performed almost 12 months after my hysterectomy. My gynecologist found that my lower abdominal area was indeed FULL of extensive adhesions as I had suspected and suggested to him. My ovaries were stuck to my vagina, bladder and abdominal wall. My bowel was also caught up on my abdominal wall with adhesions in various areas also. Most of my information and support has come from a wonderful site called the International Adhesions Society http://www.adhesions.org
After talking to many of the regular members of the message board and fellow sufferers I decided to undergo further surgery. On the 9 April I underwent further surgery to divide the adhesions and remove my ovaries. The ovaries were FULL of endometriosis, which I had suspected from my previous Internet research.
I have had to return to hospital again since that time for further pain relief. What I have learned through all of this is that patients ARE NOT given enough information and Internet research gives us the opportunity to gain that information. Information is power, the power to make choices and informed decisions about our OWN BODIES. Doctors are not Gods, and should not be allowed to decide which information is suitable for the patient, and which isn't. I continually have to ask my doctors very specific questions to find out about my condition. If I was unable to research this disease on the Internet I shudder to think where my health would stand at this point. Oprah & staff, if you research the Adhesions website, you will find many horror stories about ordinary people who's lives have been changed forever by doctors who have performed repeated surgeries on unsuspecting patients, vulnerable due to the indescribable pain they are suffering.
My suffering still continues, as I have just discovered changes in my liver and I am now again on the merry go round......it is time for a gastroenterologist and further investigations. Thank God I have the Internet, I have already started my research, so that I will be ready with the right questions, to get the right answers, to make the right choices for my future health and me. Thank you for considering this topic worthy of discussion. It is my hope, and the hope of many from the IAS web site that you will one day consider Adhesions a subject worthy of its own show.
With respect, Joanne Eslick
-- You will never never know.......if you don't give it a go :)