Tish,
I am sorry I have to say this, but welcome to the "Adhesions don't cause pain" club! I would say that at least 95% of the members here have been told the same thing by at least one doctor. I think the biggest issue in your life isn't the doctor who told you that they don't cause pain, but the doctor that told you they don't recur. There is a doctor that is probably destroying many lives.
First things first. Adhesions do not cause pain. They really don't. But, adhesions attach themselves to different parts of our bodies, different organs and as you have experienced, pull these parts to places where they do not belong. It is those parts, whether it be your bladder, your liver, or any other part of your body that is causing the pain. You are not crazy. Consider yourself lucky that these other doctors did not perform surgery. A doctor who says no is just about the best thing that could happen to us. There are only a couple of doctors in the world, YES IN THE WORLD, that are having any type of success in the lysis of adhesions. They are located in Scranton, Pennsylvania and Germany. The doctors in Pennsylvania are great but there are difficulties with health insurance coverage and having to pay large sums of money out of pocket. It is probably cheaper to go over to Germany for 2-3 weeks, having your initial surgery and a second-look procedure approximately a week later than it is to go to Pennsylvania. Many people are choosing this option.
So, unless you can get to either of these places your best bet is to obtain good pain management...and yes most of us are using heavy narcotics...and try and live with the pain. Adhesions begin reforming immediately after surgery and stop after a week or two. There are many, many doctors who will tell you that they can cure you of your adhesions. There are, like I said, only a precious few who have had any success. While you may be in tremendous pain, pain is something we can and do live with. It only gets worse with each additional surgery. Please take your time to explore the International Adhesions website. Educate yourself. Print out materials to take to your doctor and provide your family members....even they do not understand. Search the archives....type in the name Helen Dynda and go through a group of her postings every day until you can get through them all. She provides us all with such valuable information. Also, take the time to read the quilt. Read the stories there....including mine (Karla Nygren) and take the time to post your story. You will soon realize why we say what we do.
Once again welcome and God Bless.
Karla
Tish <CookieTish@aol.com> wrote: I cant believe i finally found a place to talk about adhesions, i am
crying right now because i realize now that i am not alone in thi world
of misery!
On Oct 12 2000 i had a total abdominal hysterectomy and on Jan 8th 2001
my life with adhesions truly began..i had terrible pain..especially when
i stood up. I went to my Dr and he said its probably adhesions and
theres nothing you can do for this problem but take narcotics..there
beggining my life on narcotics.
I went to Dr after Dr after Dr and they have all passed me on to another
Dr..i have had CT scans MRIs XRays you name it ive had it..all tests
showed there to be no problem..but yet they all wrote me Rxs for
Narcotic pain relief! Finally in Nov 2001 i hit upon a Dr who said ok
yeah we need to do surgery to relieve this pain...even though he was
sceptical that adhesions were causing the pain..well he did laparoscopy
on me and found that i had massive adhesions..My lower intestines were
pulled up to belly button level and my bladder was above that..sucked up
by adhesions...he made one small cut on my belly button and one larger
cut on the original hysterectomy scar...he cut all of these adhesions
and announced to my family that i was all better and that adhesions
generally do not reoccur..so my pain was finally over..well yeah it was
for about 3 weeks i felt like my old self no narcotics no pain no
nothing...But now i have a whole different type of pain..and bowel
problems and pain and pressure..and yes im back on the narcotics again
and so depressed i cant even see straight..is this as good as my life
will ever get? Why dont Drs tell you that this could happen before you
have surgery? Why dont they believe you when you tell them how bad the
pain is...why do they have to look at you like your just a simple
hypochondriac? Why dont they know how bad this problem is? I even had
one Dr tell me that ADHESIONS CANNOT CAUSE PAIN! its Scientifically
impossible! Well Ok well why am i in so much pain then?? What is it from
if its not adhesions then it must be something else please fix
it...Thanks to anyone who listens.
Tish