At Sun, 20 Aug 2000, Jaynie Jarvis wrote:
>
>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