Re: My Side of the Story (Sally)
From: Elaine (noemail@email.com)
Sun Jun 29 18:40:58 2003
Sally, thank you for your response. I'm lucky that my gynecologist is
kind and considerate, but the last time I saw him my husband and I both
felt he was not interested in finding the cause or felt strongly that it
wasn't his area (i.e. not gynecology related). I was certain when I
explained what I felt, he'd know exactly what was going on. Considering
he did the hysterectomy (no scar tissue) and afterwards when I had bowel
problems he kept saying IBS. Then, when he removed the cyst (just four
months later), he found the adhesions attaching my small intestines to
the omentum - in my mind that validated the pain and problems I had. I
guess for the medical community though, or at least this gynecologist,
it wasn't convincing?? I know he is completely sick of me and honestly
I'm sick of me ha!, so I would rather just go to a new gyn. My problem
is, no other GYN in the clinic will see me. A nurse told me that was
because those in the clinic won't handle other gyn's patients unless
that doctor is on leave or has left. I'm sort of in a rock and a hard
place I guess. I respect my doctor, he seems like a great person.
However, somehow I've become the "chronic" patient with all this. He
didn't even do an exam on the last two visits. We discussed my pain and
he suggested anti-depressants. Which, of course, I said no to. I'm
frustrated, my pain is irritating at times and excruciating at others,
my feelings are hurt - but I'm not depressed. If anything, I'm more
determined than ever to find the cause.
I went to our insurance and tried to change my regular clinic where a
nurse practioner said she'd put in for the civilian gyn referral.
However, she never did. I asked them to change my clinic so I could
hopefully see a real doctor since I never seem to see anyone but
physicians assistants or nurse practioners. The insurance lady said my
clinic was the best they had and I'd have worse luck with the others.
She did secure me an appointment with a doctor for this coming Tuesday.
I've never been scared to go to a doctor before, but I'm finding I'm
dreading this so badly I'm considering cancelling the appointment :(.
Since April, I've been to this clinic twice. The first time they
thought I had a bowel obstruction, but the xrays said no. Instead of
getting a referral for a GYN, I was sent to the GI doctor. This of
course will result in the IBS diagnosis that I refuse to accept. Sure,
people have this, but it usually presents (from what I've read) in your
late teens, early twenties. I never had this constant ache, more pain
when active, constipation, horrible cramps and diarrhea problem until
these surgeries.
At any rate, I've printed two articles out from OBGYN.NET that I plan to
highlight a few things from and speak to this doctor about.
http://www.obgyn.net/displayarticle.asp?page=/women/articles/bradley/banter_0708
http://www.obgyn.net/displayarticle.asp?page=/women/articles/bradley/banter_0615
One is about ovarian cysts, the other about adhesions. I keep reading
that cystectomy is most likely to cause adhesions and most times they
will not show up on ultrasound or other imaging tests.
My main objective is to get someone to help me find the cause. On one
x-ray it said:
Incidentally noted is incomplete fusion of the posterior elements at S1.
I have read that problems with the sacrum can present as pelvic pain. I
have pelvic and low back pain, but it's at the same time so I have
always assumed it was like the cyst - makes your back hurt, not your
back making your abdomen hurt.
I'm fully willing to explore whether it is scar tissue, a back problem
or some other odd thing that hasn't been considered. I just NEED a
doctor who is willing to help me find the cause. I'm even willing to go
have a mental evaluation if needed in order for someone to believe me.
There was a time several months ago I doubted my sanity, but I've spent
so much time keeping track of this pain, making SURE my emotions (when
I'm angry, upset or sad) do not make it worse. I feel our minds do play
a large role in our well-being and I wanted to ensure I explored all
avenues without wasting any more doctors' time. I feel I've done that
and I'm confident something is wrong. Not life threatening thankfully
(or I'd already be dead ha ha!), but enough to impact my quality of
life.
Goodness,I've just rambled, but thank you so much for your understanding
and your willingness to listen. I'm greatful to have a place to discuss
my feelings and worries. I feel I've burdened my friends and family so
much so that most everyone dreads to talk to me these days :(. You
ladies are the best!!
At Sun, 29 Jun 2003, Sally Grigg wrote:
>
>Dear Elaine, I sympathize greatly with you. When I had appendicitis last
>fall, all of our local doctors left on Holiday around Thanksgiving and a
>surgeon who had been a military doctor all of his life became "my
>doctor" for two weeks. God help us all. He told me adhesions were "not
>a problem" and
>no one went to Germany for adhesion operations as it was not necessary
>(I had gone because I was dying and it was one of my best decisons). He
>also told me
>that adhesions did not hurt, caused no harm, and my basic problem was
>that
>I was drug addict. While he was telling me this, he had a scapel in his
>hand
>and proceeded to "open up" my incisions so they could drain more. He
>cut so deep
>that my intestines healed into my incision scars. He gave me no
>medication for
>pain when he cut into me at that time because he said it did not hurt. I
>had to
>bit down on a wad of sheet to keep from screaming. All in all this man
>was a crocodile and if he is representative of the type of doctor you
>have to deal
>with regularly, you need all the support we can give you.
>
>Perhaps you could print out some of the papers that Helen Dynda has
>emailed the
>IAS Board. There are many studies that show adhesions hurt you, cause
>pain, etc. You could also print out studies showing that medications
>given to you for pain do not turn you into a drug addict. There is much
>to be gained by researching on this site and others. Learn as much as
>you can and go to the doctors armed with hand-outs. It may not help as
>they seem pretty set in their ways, but maybe there is one somewhere who
>will listen. Good luck, Sally Grigg
>
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