Over the next two years, I had pain. The doctors did testing, proding, poking, and they said that I was "tired from my kids" or, this was my favorite, " Is it really that bad?" The adhesions were wrapped around my ovary and tube, and had entangled around my intestines. But no,,, it couldn't be that bad, I thought I was a little crazy that maybe I was imagining that i was in that much pain.
I had to go in for another surgery, This surgery got my hopes up. I was totally sure that it was going to take away my pain, little did i know that it would do nothing but add to my problems. The adhesions were so intence that the doctor had to close me up after he took my tube and ovary , he couldn't take the adhesions down because they were so very bad.
Any kind of activity would set off this horrid pain, Walking, resting, turning, bending, It all made the intence pain inside my belly continually jab, and hurt me. I was a young mother, and needed to be active with my children, and I just couldn't do it. I went to several Dr.s at this point, to get opinion after opinion. Each one would read the last, and all my medical records. Not one of them offered to help "treat" my pain. They always said, " I can't find anything on your Xray" or, " Your ultrasound looks good, are you sure the pain is THAT bad?:" They said, "Well, I don't see anything, and I can't treat something that just isn't there". At this point, I knew I must be going crazy.
There has been, and still is much controversary in the medical profession over this issue. From what I have read and researched, and I am not a professional, just a patient, So many patients are having to go thousands of miles just to get a doctor to hear what is going on with their own bodies. There is successful treatment in Germany, but not here in the US. I have learned so much over the years, that if you don't take control , and be an activist for your own body, many doctors certainly won't listen, or help. The biggest thing I have found is that So many doctors have not continued to educate themselves on Adhesions, or the problems Adhesions can cause in a patient. They love to jump into surgery to "fix" us ,, but I certainly don't remember Adhesions being listed as a complication to any surgery I ever had. Frustration, feelings of horrible abandonment, and hopelessness start to overwhelm you at this point. When we can't count on our doctors for help ,, where do we go?
Many patiens that suffer from adhesions and other adhesion related diseases are having to go to Germany and Australia for the one barrier that is successful. I really can't figure out how or why they are able to use this barrier when so many in the US can't get it.
After nearly losing my life when i was 32 with 4 small children, in 1997 due to the adhesions wrapped around my intestines, and other internal organs, I said enough is enough. It was my 13th adhesion related surgery and I could do no more. I decided to live in pain. I couldn't go through any more. I felt alone, desperate, but most of all sad. Sad because as a mother of 4 children, I had to figure out how to deal with the pain, and raise my children, and be a wife. The feelings of isolation that set in is endless. Family can't understand why you look so good, yet say you feel so bad. Friends say, "I thought you had an operation to take care of that" your children get tired of hearing, "Not today kids, mom needs to rest". If it weren't for the strength of my husband, I would not be here today. He is my pillar.
Then one sleepless night, I found an awesome website. I sat and read story after story after story. http://www.adhesions.org. So many other people were going through exactly what I had. So many feel the same way. The feeling of no one understanding me left my heart. The one sad realization was that there were more like me. That they were suffering the way i was, and I wouldn't wish this on my worst enemy. Some didn't have quality health care, some couldn't get disability, or qualify because adhesions can't be tested and proven without surgery.
The reason I'm writing this, is because it is my Intent, my wish, my plee, that the Adhesion , and other ARD sufferers are recognized around the world. That we are not crazy, and we are people just looking for understanding, treatment, and benefits. That we are not humiliated, or looked down upon when we seek treatment for our pain. We are looking for just a few simple things,, Doctors, educate themselves so we may be treated. That our bosses understand when we need to go to the pain clinic once a month, It is fully my intent to bring this awareness to the public in anyway I can,, It's time to validate adhesion sufferers, and ARD patients.
I called my insurance company for a referral to a pain management clinic, one that has handled adhesion cases. Cigna. They responded with.... We can't find one. What do I do now?
I start to fight, fight for the awareness, fight for human spirits that are fading everyday because of Adhesions. Fight for validation. Please don't let the ignorance continue.
Thank you, Kris Ann
You don't know me, I'm just a face in the crowd, Someday you might understand me, I look just like you. Your sister, your mother, your friend. Today my face might be twisted, tear stained, and sad. Today I might not smile, I might not hear, I might not stand. Today, I live by today, When I first open my eyes, I get a glimpse of what today may bring. Am I curled up in a ball, lying in, my own silent dream. Am I able to make it to the tub, to relax, to get rid of the screams? IF i make it to the kitchen, to eat, to take my meds, maybe I can kiss my kids without a tear in my eye from the stabs, and the strain. Heading to work, I pray they won't see through me, Did my eyes clear up I have to look ok. If I leave today, there is sure to be rumors but how can I stay if the pain pounds like drummers. I've lost myself somewhere in the stabbing, the jabbing, and the throbbing. Somewhere in there was laughing, and running, and busy fun filled days. Where did they go, look what is left behind, A shell of a person, I'm hollow inside? If I look through my pain and stand outside of myself. I could tell you of good times and happy no doubt. But they are clouded now, by doctors, and tears. My story's no different from many you'll find here. Someday my wish if for all to know, the struggles we face, every day as they grow..... Adhesions are part of us, but not who we are. Please see past our pain, and look into our hearts. For we are Mothers, and sisters, and friends to all. But to us we're just looking to make it tomorrow.