Was in Nevada... Now in Washington... Adhesion pain since the age
From: Julie Tom (HelmutJord@aol.com)
Fri Oct 29 18:06:45 2004
Hello ladies!
I used to live in Nevada (near Reno) and for 11 years (since I was 12) I
suffered from Adhesion related pain. Every doctor that I went to
treated me poorly! I agree that there is a complete lack of qualified
doctors in Nevada, and so does my new doctor who actually went to school
there (he called them a bunch of uneducated Hicks after he heard my
story!)
In Nevada... I was told various things by various doctors...
That my pain was because I somehow wasn't taking birth control correctly
(huh?)...
That I was making up the pain to get my Vicodin fix (I spent years just
dealing with the pain because doctors wouldn't give me meds!)...
That the reason I hurt was because I just had a "bad attitude" !!!
That the pain was all in my head.
That I was lying about having pain so that I could get notes to get out
of P.E. (got this A LOT when I was still in school).
That I was a junkie who just had too many sexual partners, and that was
why I hurt (I don't even want to go into what I said back to THAT
doctor).
That I had Pelvic Inflammatory Disease (which requires you to have an
STD, which I never had!)
See... in early 1992 when I was 11, almost 12, my appendix ruptured
really badly (because the doctor I was seeing told my Mom that I wasn't
in any danger, and that my stomach pain was all made up!) and I was in
the hospital for a little over a week with tubes coming out of my body
pumping out the poison! I didn't know then, but they also had to take
out most of my right ovary with that operation (I just found this out
last year).
I started having horrible pains in my stomach about a month after having
that surgery... and that is when my hell with doctors began! I
complained for YEARS about stomach pain, but the doctors just told my
Mom that it was all psychosematic because I was overweight and didn't
want to do P.E.!
In 1999, I ended up in the ER where they found a large cyst (they said
it was the size of a grapefruit)... and I was in surgery a few days
later. The cyst ended up being 8 pounds and 28 inches around!!!!! And
it was fused to everything with adhesions! They had to pull and cut it
off of my organs. I also found out at that time, that I was born with
Uterine Didelphysis (A completely split uterus... all the way down to
having two cervixes).
Sadly... right after having the cyst surgery... I started having worse
pains. I was, at one point, bedridden for almost two years because it
hurt to walk, or move or breathe! Doctors in Nevada wouldn't do ANYTHING
for me! They all told me that if it didn't show up on and Ultrasound...
then, there wasn't anything there!
It wasn't until last year (July of 2003) that I came across
http://www.PelvicPain.org ! I found Dr.Naughton in Reno, and made an
appointment. He told me that there was no way to know what was causing
my pain, unless he went in to look... and on that first visit, he had
me scheduled for Laproscopic surgery within weeks.
I was SO scared that he would get in there and find NOTHING. I had
actually started to believe that the pain really was all in my head!
But, he went in, and found that adhesions were binding everything
together. The surgery went way longer than he thought it would, and he
when it was over he told my husband "It was really bad in there. Any
other doctor in this state would have pulled out and opened her up!".
I had adhesions that had tied themselves around my bowels... Adhesions
that had glued my fallopian tubes to my uterus... Some that had just
made a great big wall across where my appendix scar is (he couldn't even
get through all of those!)... Plus, I had a large cyst on my left ovary
again!!! I ended up getting a bad Staph infection after the surgery...
and I suffered for WEEKS because of the amount of work he had to do in
there!
But, within a few months, I was relatively pain free! My husband and I
decided to move up to Washington (near Seattle) and I was hopeful that I
would have at least a few years of relief.
Sadly, I only got about 11 months... and now I am as miserable as ever!
I know now that I can't keep having surgery each year just to help the
pain, because these damn adhesions are like weeds that just keep growing
back! But, now that I am in Washington, I have more options for pain
relief... and I was very lucky to have already found a doctor that
takes my pain VERY seriously. He has me on Demerol, for now. And, I am
seeing a Pelvic Pain Specialist from the website on November 4th... and
I guess that she will be able to refer me to a local Pain Clinic, where
they can put me on a daily "cocktail" for the pain.
Right now, I am barely able to function... and I am often VERY
depressed. I feel like my whole life has been a struggle with pain, and
there is absolutely no end in sight!!! I am lucky, however, that I am
still young... and there is a chance for medical advancement! I know,
now, from reading all of the stories on this message board, that
surgeries are NOT the answer! It is more of a last resort when the
adhesions have started to block everything from working properly. *sigh*
I just hate that I am only 24 years old, and am in SO much pain!
My family isn't supportive of me, because they have been told my whole
life that I am lying to them for attention.
I just don't know if I can handle a lifetime of pain with no hope of
feeling better...
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