I thought I would share my letter to the government to all of you. I sent it
today to the people it goes to. If anyone is unable to do theirs and needs
any help, I'll be more than happy to type it up for you.
Hugs and Love,
~Chrissie xo's
I am petitioning the government to take action to set up an CD-9-CM surgical
code to help Medicare and Medicaid collect data on the significant procedure
known as "Application of Adhesion Barrier for Prevention of Adhesions."
My name is Christine Damon. I am 38 years old and have suffered from chronic
pain for 12 years before I was diagnosed as having Adhesions. In the early
1990s I was diagnosed as having Stage 4 Endometriosis and have had a total of
10 surgeries.
My first surgery was in 1992 and that was a laparotomy. Then about 5 years
later came a laparoscopy. A year after that came another laporotomy, which
other laparotomies and laparoscopies followed almost each year. Even after
my total abdominal hysterectomy I have had 2 laporotomies.
At first the doctor's were telling me it was all in my head. The pain I was
having was normal because I was a female and trying too hard to get pregnant.
My menstrual cycle was supposed to be painful. Take it and stop complaining
over nothing. Go and talk to a priest and take the pain you are supposed to
have.
For years I listened to doctor's and when I had a normal cycle as they said I
should have; I would bleed heavily and the pain would be so bad that I would
vomit, have diarrhea, and stay in bed all day with nothing but a heating pad
and an over the counter pain reliever I would pop in my mouth like it was
candy.
After going to doctor after doctor my disease, stage 4 endometriosis, had
finally been diagnosed. I never heard of the disease but now I believe I'm
educated on it. Now I want to make others aware as well. I have had several
laporotomies, laparoscopies, and a total abdominal hysterectomy. To this
date, I have had a total of 10 surgeries, with these surgeries has come
adhesions, another disease I have never heard about and feel so alone, and
another disease I want to make others aware of as well. My gynecologist said
to get rid of the pain of endometriosis and the adhesions, I should have a
hysterectomy. After the total abdominal hysterectomy he said, you would be
pain free.
That was 5 years ago and my pain is so debilitating that it's difficult for
me to get out of bed in the morning. I've been to several doctors and pain
management with the same answer. Adhesions do not cause pain; you must be
having phantom pains. Some people like sympathy so you must be that type of
person. My husband of 7 years now and I don't have a normal sex life because
of this pain I'm in. And if we do have sex like any other normal couple, the
next day I'm in bed all day rolled up in a ball crying and vomiting with
tremendous stabbing, burning, tugging, pain. God forbid if I ever say a
direct "yes" to future plans, what I have to say is, let's see how I'm
feeling that day and we can go from there. My life is like an older lady who
should be in a nursing home. I'm a 38-year-old woman who feels like she's in
her late 90's.
I have lost friends because of my debilitating pain; I have lost jobs because
of my pain; and my husband has just about had it with my pain. I have no
quality of life and I'm at my wits end. Oh sure, I have been to several pain
centers, they say that adhesions do not cause pain, pat me on the head and
tell me to get some aspirin.
Then what is causing my pain? What is causing me to have no life, no friends,
and a family who doesn't understand what I'm going through and is loosing
contact with me? Why is it I can't lead a normal life - intimacy with my
husband, or hold down a job because I'm in so much pain I can't walk or
concentrate on the simplest things? Why is it that I have to put on my
"happy" mask to everyone just so my pain doesn't show through and I'm
considered normal when I have the mask, but my insides are being tugged and
stabbed and burning with excruciating pain? Why is it I feel I want to end my
life because I can't take the pain that I have all day, every day, day after
day, night after night and there is no help for me, and I don't see any help
in the future? Why is it that I'm standing on top of a mountain screaming on
top of my lungs PLEASE, SOMEONE LISTEN TO ME - CAN ANYONE HEAR ME? PLEASE,
CAN SOMEONE HELP ME? PLEASE CAN I BE NORMAL. ……PLEASE…………..PLEASE, SOMEONE
HELP ME…….. Please, someone, someone stop this madness!
You know with all the research performed around the world you would think
health professionals should know by now that adhesions do cause pain.
Adhesions stick to an organ and anything else they can adhere to. When I
twist my body one way the adhesions pull another way causing the adhesion to
pull on the organ and cause me severe pain. Why don't any of my several
doctors believe this? Why haven't any of them heard of an adhesion barrier?
It's funny really, here I am in my gynecologist office telling him what an
Intergel Barrier is and pleading with him to use it on me. He didn't feel he
was aggressive or educated enough to perform that task.
About five years ago I had a laparoscopy for endometriosis and adhesions. Of
course I had to go out of state to finally find a doctor who would perform
the surgery. When I got back home to recover from the surgery, I had internal
bleeding and almost lost my life. If only there were more research for
adhesions then I would not have gone through that horrendous time in my life.
I would not have put my family and friends through that horrific scare of
seeing me almost die.
I have gone through many pain clinics with doctors not believing that
adhesions cause pain and that I'm just a drug seeker. I have fought for pain
medication to no end. Now that I do have somewhat adequate pain medication
they will not give me enough to cover my pain, just touch upon the top of it.
Is this how I'm supposed to live my life? There is research for AIDS, cancer,
spinal injuries etc. Do we have to get a celebrity with lots of money and
public attention to tell the world about adhesions and how they cause pain in
the body, mind, and soul? I tried that and even Oprah didn't reply to my many
requests.
It is my faith in God that makes me believe that I am going through this pain
to educate medical professionals about this debilitating disease. That faith
is the only thing that keeps me going.