Re: area's of pain, is it Endo? to mdustin
From: D (anonymous@obgyn.net)
Wed Oct 10 19:40:30 2007
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/
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)