I have been so lost !!!
From: Jaynie Jarvis (hipjaynie@webtv.net)
Sun Aug 20 10:05:18 2000
Yes, I have been so lost, but now I am found ! After hearing from Dr.
Redan that he saw no adhesions in my video I was so lost. Wasn't sure
where I belonged and still not sure. But this forum has been such a
support for me and my mysterious pelvic pain that I decided I needed to
come back. Plus I felt guilty to not be here sharing my experience,
strength and hope. I had no hope for months. I just carried on with my
life taking my icky pain meds and dealing with the side affects of them.
My last DX from Barbara Levy MD was PHANTOM PAIN and that I must have
been PHYSICALLY OR SEXUALLY ABUSED. Then she told me that adhesions do
not cause pain and sent me to a pain clinic at the University of
Washington. I went there for a all day sceening with my husband and
daughter. They told me that opiates do not help " MY KIND OF PAIN "
Still confused what they meant by that. I think she only is considering
my muscle aches and pains that I think is from being in bed for the
majority of 2 1/2 years and 3 operations and being jacked around by
several ignorant doctors that do not listen. Like I have asked several
of them why I can't take estrogen with out it causing severe pelvic pain
and they just look at you like that is not possible and your nuts !!! I
have fired Barbara Levy MD . Untill this week I was going ahead and
going to pain clinic as soon as the insurance authorized it but the
clinic sent the paper work to the wrong address. I would hate to waste
$18,000 and come out of there maybe feeling better muscularly and
emotionly but still having my original pain. I am sure it will cost me
about $5000.00 or so. One reason I was excited is because I would stay
at the Ramada Inn for those 3 weeks all by myself . I think that sounds
good because then no one could see me suffer. It kills my husband to
watch me in pain and crying all the time.
I have read about pain mapping alittle but was afraid of it. Now that I
have read more it sounds like that is what we all should be doing. Less
invasive so decreases the chance of making more adhesions. I couldn't
believe it when I read that so many women , like me, they have no
explanation for our pelvic pain ! It did help me feel not ALONE though.
My husband and I have decided to check out Dr. Andrew Cook who does
pain mapping in San Fran which is kinda close to Seattle WA. I have
also written to Dr.Sobolewski for a referral. The odds are only 10-20 %
of the time they find what is wrong. Or contemplating going to
Redan and Riech who said they would take a look for me. When I sent my
records to them Riech was out of town so not sure that he even saw them
only Redan who is not the pelvic specialist. I just wish Riech would
have given me his opinion.
See when you haven't been around for awhile you have alot to say !
One more thing ! Levy put me on Nortryptilene (spelling ?) for my
PHANTOM pain and told me to take mineral oil for my constipation. I got
so I could hardly walk around . All my joints hurt so bad. I would
wake-up in the mornings and my finger joints hurt so bad to move them.
So I went off the stuff and the mineral oil because my alternative care
person said it depletes your body of the minerals I was trying o get in.
( the mineral oil ) and the nortryp. is very bad for your kidneys and
liver. Not sure if it helped my pain much if at all. And I am working
on getting off Celexa , my anti-depressant, and am going to try SAM-E.
Which is supposed to be good for your joints and emotions. I have had
enough of there wacky drugs that only treat the sypmtoms.
Would like to hear from anyone out there in cyber land. Thanks for
listening Jaynie