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Re: area's of pain, is it Endo? to D
From: mdustin (anonymous@obgyn.net)
Wed Oct 10 12:09:37 2007
I actually read that from Dr. Redwine right after my doctor told me
that "it must have been Microscopic Endo".
I wish I was closer to a real specialist, I would send my records in a
heartbeat. But I cannot afford to leave the state. Or even travel more
than 2 hours away. And there just isn't any specialists in my area.
I am at a loss.
At Wed, 10 Oct 2007, D wrote:
>
>There's no such thing as "microscopic endo" - that's what doctors who
>don't know any better say when they don't know what's wrong and don't
>want to admit they missed what should have been found. Check this out:
>
>http://www.endometriosistreatment.org/html/microscopic-endo.html
>
>"For surgeons with great experience in endometriosis, IME (invisible
>microscopic endometriosis) simply does not exist. Virtually 100 percent
>of all the endometriosis in a woman’s pelvis can be seen, but only if
>the surgeon knows what to look for. Use of the term "microscopic
>endometriosis" as the description of an apparently invisible entity is
>evidence of someone who is inexperienced in endometriosis and the
>history of its study."
>
>I also made a post earlier today you might be interested, explaining
>that a diagnosis of endo rules out IBS - you simply can't have both.
>Still, the GI consult is a good idea to rule out other causes. And no,
>IBS doesn't cause bleeding, not for 33 days nor for one.
>
>At Wed, 10 Oct 2007, mdustin wrote:
>>
>>I am being sent for a GI consult on the 25th of this month. My gyn told
>>me that he doesn't think any of my current symptoms are gyn related and
>>further more, suspects IBS. That's all well and good, I suppose, but
>>IBS doesn't cause bleeding for 33 days, does it? I am going through with
>>the GI consult to rule anything out.
>>
>>As far as the pain I still feel, my doctor informed me that either it
>>could be referred pain and/or I might have had 'microscopic endo' that
>>he could not see. Which is why he gave me Lupron. I still have this
>>pain though. It plagues me every single day and only worsens but does
>>not go away. I have had this pain since my c-section over 3 years ago.
>>It feels like a tennis ball on my right side....not to the touch though,
>>just like it's inside of me...hard to explain. I used to think it was
>>my ovary, I really don't know what is right there inside,whether it's my
>>ovary, my appendix...I don't know...but whatever it is, it feels very
>>hard and like it's going to burst. It feels this way especially when I
>>have my period, which is right now, even though I'm hardly bleeding
>>today.
>>
>>At Wed, 10 Oct 2007, D wrote:
>>>
>>>>My question I guess is 1.) was all of your Endo found on the area(s)
>>>>that you actually had pain.
>>>
>>>Yes, and no. I had most pain on my left side but also on my right side
>>>and just everywhere. My doctor found an adhesion in that area on the
>>>left and removed it. I had small, diffuse endo scattered all over my
>>>lower pelvis - cul-de-sac, sidewalls, ligaments, etc. - and he had to
>>>remove quite a bit of peritoneum to get it all. I also had pain in my
>>>legs before surgery, and removing the endo got rid of that pain, too.
>>>
>>>>2.) what else could this pain be from if
>>>>it's not my Endo? Like I have said before, my doctor (gyn) has decided
>>>>that my pain is not gyn related, but suspects GI instead. Besides my
>>>>appendix (which you would think would have burst by now if that was the
>>>>problem), what else is there that would be the reason for the constant
>>>>pain?
>>>
>>>It could be referred pain, as you mentioned before, but I suspect more
>>>that your doctor simply missed some of the disease. Have you had a GI
>>>workup? If not, what are they waiting for? At my first lap (June 2006)
>>>the obgyn who did it couldn't find ANYTHING she thought was endo, didn't
>>>even do any biopsies. A year later, the endo specialist found the
>>>disease all over the place and removed it all. In between, I was sent
>>>for a GI workup, which ruled out any causes in that area - if you
>>>haven't had a colonoscopy/endoscopy, you probably should - it's
>>>important to rule that stuff out. My GI doctor also found a couple
>>>small ulcers I got due to taking NSAIDs, and although they weren't a
>>>source of pain they surely would have become one if they hadn't been
>>>found and treated!
>>>
>>>Lots of doctors do not know how to recognize all the many appearances
>>>endo can take, and they simply don't see it. That's one of the biggest
>>>reasons I think it is so important to go to the very best endo excision
>>>specialist you possibly can.
>>>
>>>If your doctor burned the endo off, rather than excising it, he may have
>>>left endo behind - they often can't burn deep enough to get it all. Have
>>>you considered sending your records to a specialist for a review? They
>>>may be able to answer some of these questions for you.
>>>
>>>--
>>>Find an endo specialist in the ERC's EndoDocs group:
>>>http://groups.yahoo.com/group/EndoDocs/
>>>
>>>Try an excellent endo support group:
>>>http://groups.yahoo.com/group/erc/
>>>
>>>Info on pain management:
>>>http://www.painfoundation.org/
>>>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
>Info on pain management:
>http://www.painfoundation.org/
>
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