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Re: area's of pain, is it Endo? to D
From: mdustin (anonymous@obgyn.net)
Thu Oct 11 08:47:39 2007
Thank you. I have a doctor's appointment tomorrow and I'm going to
really get the ball rolling....It's time to stand on my own two feet and
tell the doctor's what I need, rather than just waiting for them to take
care of me. Give me stregnth!
~Maggie
At Wed, 10 Oct 2007, D wrote:
>
>I'm sorry you're feeling so stuck - it's awful to know there may be a
>doctor who can help you, but circumstances won't let you get to them! A
>couple things that helped me when I was stuck - I got a referral to a
>pain management doctor, he really helped me get through some awful,
>painful times. Also, I sent my records to a specialist for a review,
>which at least gave me another point of view that said I needed a second
>laparoscopy, and confirmation that it still might be endo even though
>the first doctor missed it. That helped me with my pain doctor and with
>the other doctors I saw, too. Having a record review really can help,
>even if you can't see the doctor as soon as you'd like, or ever.
>
>--
>Dr. Mosbrucker is doing record reviews for free, I really hope you'll
>consider sending yours! Her blogsite:
>
>http://endometriosissurgeon.blogspot.com/
>
>I just think that if you can get the pain under control enough to work
>there's a lot more chance that you'll be able to find some way to get to
>an excision specialist. That's how it went for me. I'm told that Dr.
>Mosbrucker is also taking insurance, maybe she takes yours? I suggest
>doing some research on exactly how much the surgery will cost so you
>know what your goal is. Some doctors are starting to work with credit
>companies that loan money to people specifically for medical procedures,
>maybe something like that could help?
>
>There may not be a way today, but that doesn't mean it won't happen
>sometime! Please stay open to the possibilities, and keep pushing for
>better care!
>
>At Wed, 10 Oct 2007, mdustin wrote:
>>
>>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/
>>>
>--
>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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