Sir,
I am writing today to ask you to help me bring to the public’s attention a serious and invisible disability that affects unknown numbers of our family, friends, and community. For many years I have lived with debilitating pain that could not be easily explained and I was often told that if I were to have a child the pain would disappear. Seventeen years ago, I gave birth to the first of our four daughters and discovered the sad truth, having a baby would not relieve my pain.
While the birth of our daughter was a happy and proud occasion, the circumstances of her birth would cement the beginning of future pain and disability for me. Over the next seven years our three other daughters entered our world via a c-section, following in their eldest sister’s lead.
Over the years my pain increased and I discovered it very difficult to hold down a full time or even a part-time job because on a regular basis I needed time off because of incredible pain. After twenty-three years of suffering I was advised that a hysterectomy would offer me the relief I desired from the pain and disability I had suffered “invisibly”.
In February 2000, I underwent that surgery and my life, and the life of my family changed forever. During that five and a half hour operation, the surgeon discovered that my abdominal cavity was full of adhesions and that all my pelvic organs were “glued” together. I almost lost my life during that surgery and since then, I have endured four more major surgeries as well as a number of minor surgeries and many, many uncomfortable tests and procedures.
During the first almost twelve months after the hysterectomy I thought I was alone, that no one else could ever suffer the cruel and debilitating pain I was experiencing. I was told it was uncommon and unusual and that surgery usually resolved my “kind” of pain. I began to ask questions, seek opinions and consultations with other surgeons and pain management specialists. At that point nobody could tell me what was wrong with me.
I began to research adhesions on the Internet and discovered that I wasn’t alone, around the world large numbers of women, some men and children also suffered from similar problems and pain to mine. I found an International Web Site, which offered a “Message Board” where fellow sufferers could leave messages to each other, ask questions, seek support and understanding and also find friendship and empathy.
This is a site I still visit on a regular basis and I am the NSW coordinator for the International Adhesions Society http://www.adhesions.org . However, this organization is based in the United States and I discovered that most of the information available was irrelevant to Australian sufferers due to the differences in our medical and hospital systems.
So in February this year I founded The Australian Adhesions Support Group on the Internet and called it http://www.bombobeach.com because of a particular “visualisation technique” I use to help me divert attention away from pain, allowing my body to relax using this well known beach on the south coast at Kiama
The site continues to evolve and add new levels of information and support to fellow sufferers here in Australia, but also around the world. We now boast membership in Australia, New Zealand, UK, Canada and the USA. I have had correspondence with sufferers in Brazil, Singapore, Ireland, the Netherlands and Scotland.
In just a few short weeks Canada has dedicated a week to “Invisible, Chronic Illness Awareness” from September the 23rd to 29th and a number of my support group members have asked that we adopt this week in our respective country’s to draw attention to our challenges and pain during this time. We also hope to reach the larger general population, who may not have access to the Internet and therefore not have contact with fellow sufferers.
I think the few paragraphs I use on bombobeach’s homepage explains best what the intent of our group is: Adhesions (internal scar tissue) is a problem that affects women in much larger numbers than men, it is often referred to as Adhesions Related Disorder (ARD). Adhesions form after surgery, an infection (such as Pelvic Inflammatory Disease or a burst appendix), or a heavy blow to the abdomen. The reason this painful disorder affects more women than men is predominantly put down to childbirth i.e. caesarean births and associated surgeries such tubal ligation, surgical treatment for Endometriosis which often leads to the inevitable hysterectomy.
This is a place of friendship, support and laughter. My friends and I all suffer with pain caused by Adhesions, Endometriosis or sometimes both! Here you are NOT alone; someone will have had a similar experience to yours. Please, come in and stay a while, I hope you visit us often. It is the hope of myself and fellow support group members that we can reach as many people as we can living with this often misunderstood and often unknown condition to allow them the chance to know that they ARE NOT ALONE. I look forward to hearing from you soon, it would help our group so much if you could publish my letter or ask a reporter to contact me to do an interview. As you know, Aussies are very proud of their volunteering efforts, currently there are people around the world who have volunteered to bring this “Invisible Disability” to the attention of all. Please help us, your efforts will be gratefully acknowledged.
Sincerely, Joanne Eslick Founder of The Australian Adhesions Support Group http://www.bombobeach.com
-- Joanne Eslick Founder Australian Adhesions Support Group http://www.bombobeach.com NSW Australian Co-ordinator of International Adhesions Society http://www.adhesions.org
-- I am not a medical person, and all my messages are based on personal experience. I am a fellow adhesions sufferer reaching out to help others.