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Re: Endometriosis and fatigue and nausea
From: Alyson (anonymous@obgyn.net)
Thu Sep 7 08:23:12 2006
Jenn,
Can you explain "auto-immune symptomatic" endo? I have never heard the
term before and I know what auto immune means...just not how it relates
to the endo. It would be great to have a better understanding of that
since I seem to be in that group with endo that doesn't respond to
treatment. (and with doctors who don't seem to think that's possible)
Thanks a bunch!
Alyson
At Wed, 6 Sep 2006, anonymous@obgyn.net wrote:
>
>Hi Susan,
>
>The first GYN I saw was an RE and his main business was infertility. He
>said that he found endo in 60% of the women he operated on and the
>majority of them had no pain. I don't know what the overall ratios are,
>but as far as I can tell there exist at least two forms of endo 1) endo
>where the only presenting symptom is sub or infertility and they find it
>surgically and 2) the auto-immune symptomatic painful endo that drives
>most of us who post here. You can have endo without pain. I don't know
>how much of this physiology is known, but my guess is that if the endo
>toxins are seperate from the auto-immune inflammatory reaction that
>causes then pain, then you can have endo-fatigue without pain. Really,
>though, call a specialist (I can give you some names over email). Some
>specialists will even review your records and talk to you over the phone
>for free.
>
>I'm afraid I know nothing at all about the E-Barr virus. If I were in
>your shoes, I'd go to webmd or the nih site and look it up.
>
>I had 12 years of debilitating pain before getting "diagonsed via
>Lupron" (as I've said before, I advise against Lupron). This disease is
>frustrating, as if the fact that so few doctors are up to date on all
>that is known about it (esp. in the USA country...the UK, the
>Netherlands, New Zealand, and China all seem to be ahead on this
>disease). It makes me so terriably mad.
>
>FYI, I'm sitting up reading about endo right now, and I'm looking for
>people to talk to, so if you want to talk, email me and I'll call you or
>send you my number.
>
>Jenn
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