Re: How could he have got it so wrong?
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From: anonymous (anonymous@obgyn.net)
Tue Feb 13 09:23:27 2007
I absolutely agree with D.
Kristy, I know that you mean well, and I know that you have been through
a lot, but you don't know everything. An endo specialist knows more
about endo than a regular obgyn. I am not talking about a RE, who
specializes in reproductive issues, but an endo specialist who
specializes in endo. I was bed ridden from the pain of my stage iv
endo. My obgyn wouldn't do any more surgeries and wouldn't touch the
endo on my organs and bowel. I went to Dr. Albee hoping for minimal
relief, and I got maximum relief. I am working 40 hours a week, and am
off bcp! I have been off all meds for endo since four months after my
surgery. While the statistics do not say that this happens 100% of the
time, it does happen more with a specialist than with a general obgyn.
I believe that you need to phrase your posts in a different way, because
they come off very "know it all" and condescending, especially when you
are telling other sufferers where and how to post their messages. While
you have experienced a lot, you are not a doctor and do not know
everything. Mabye if you posted as a "this is what happened to me..."
type blog instead of a "this is the way that it is, and everything else
is a waste of your time.." blog, more women will hear what you have to
say. Just my two cents.
Have a great day!!
At Tue, 13 Feb 2007, D wrote:
>
>Hi Kristy -
>
>Sorry, but I have to disagree with some of your post. The top endo
>specialists have recurrence rates below 20% five years after surgery -
>none of them claim to have zero recurrences, so I don't see how your
>friend didn't fit the stats? About 20% of women will have a recurrence
>of their endo after excision - it's unfortunate that your friend is in
>that 20%, but it doesn't mean she's an exception. There's another woman
>who was posting here yesterday, Mich, and she's in that 20%, too - sadly
>someone has to be!
>
>Also, if the pathologist doesn't find endo, it isn't endo. Yes, it's
>possible that the pathologist made a mistake - but that isn't
>necessarily the doctor's mistake. All the doctor can do is biopsy what
>they think may be endo, then it's the pathologist that makes the
>diagnosis based on what they find in the biopsies.
>
>Part of the trouble with "regular OBGYNs" is that they don't always work
>with pathologists that are skilled in identifying endo, and the OBGYNs
>themselves often don't recognize all the manifestations of endo. If
>they don't think a place is endo and they don't biopsy, it definitely
>doesn't get diagnosed nor removed.
>
>We also know that excision works better than burning endo, and many
>OBGYNs burn it off. Anyone who can't get to a specialist will still
>likely be better off if they look for the best excision doctor they can
>get within their insurance plan.
>
>Adenomyosis may only be diagnosed officially after a hysterectomy and
>biopsy, but both ultrasound and MRI may also be used to diagnose the
>disease:
>
>http://www.wdxcyber.com/npain09.htm
>
>"Up until recent years it was said that adenomyosis was only diagnosable
>by the pathologist looking at a hysterectomy specimen. Now magnetic
>resonance imaging (MRI) can more accurately diagnose adenomyosis
>although many physicians feel this is too expensive a test to use
>routinely. Patterns of adenomyosis as recognized by MRI seem to either
>be diffusely spread throughout the uterus (about 66%) or focal lesions
>(33%) that only occur in one or two places (7). If a non hysterectomy
>treatment is being considered for adenomyosis, then MRI should be used
>for the diagnosis and if focal disease were shown, then surgical
>resection of the endometriosis without doing a hysterectomy could be
>considered.
>
>Ultrasound especially using color flow doppler can also be used to
>diagnose adenomyosis (8) . Sometimes it has difficulty differentiating
>smaller fibroids (leiomyomas) from adenomyosis but it is able to pick up
>about 80% of the existing lesions. For an in depth discussion on pre
>surgical ultrasound imaging and diagnosis of adenomyosis, see (The
>Presurgical Diagnosis of Diffuse Adenomyosis by Helen Bickerstaff, MB,
>BChir."
>
>I think the big problem for most of us is finding a doctor we trust.
>I've been through so many doctors, and it's so tiring to deal with the
>ignorance. If I had an OBGYN I really thought could treat endo I'd be
>happy to stay with them - but many women can't find that level of care
>in their insurance networks.
>
>It is a big gamble, but I think if you were in the situation where you
>didn't have a doctor like your OBGYN you'd understand more why some of
>us are willing to take the risk!
>
>I'm glad you are getting relief - I wish more OBGYNs were educated about
>endo!
>
>Best,
>D.
>
>At Tue, 13 Feb 2007, Kristy wrote:
>>
>>Debbie,
>>
>>For someone that is supposed to be an endo specialist he gave you some
>>inaccurate info about adenomyosis and ultrasound.
>>
>>As for me and my financial situation, I'm glad that my finances don't
>>allow me to go to the top specialists. My regular OB/GYN may not be one
>>of the top specialists but her knowledge about endo is amazing. And I
>>would rather have her treat me any day than spend the money to go to a
>>top specialist if I had the money. I get very adequate care from my
>>local OB/GYN. In fact I get much better care from her than I would a
>>top specialist b/c of how complicated my case is.
>>
>>I have a friend that went to a top specialist for the care of her endo
>>and she still has issues with it and when she had surgery with them last
>>time the dr found some endo, problem was that the path report didn't say
>>it was endo although it was endo which meant that she doesn't fit the
>>stats for what they have for recurrence rate. But she knew it was endo
>>b/c of what she felt.
>>
>>All I'm saying is that for some of us b/c of finances and the complexity
>>of our case a regular OB/GYN on a local level is actually better for us.
>>
>>It's wonderful for those that can get to the specialists but pls
>>remember that there's no guarantees with them either when it comes to
>>their surgery skill which is why I told you about what happened to my
>>friend.
>>
>>I do wish you well on your upcoming surgery. If you have further
>>questions for me you can e-mail me off list.
>>
>>Also, pls put your replies at the top of the message and cut out all the
>>excess of messages except for certain parts you are replying to so that
>>it makes it easier to read.
>>
>>As for adenomyosis, it's just endo inside the uterus, in particular the
>>uterine muscle wall.
>>
>>--
>>=====
>>Kristy :)
>>
>>http://www.geocities.com/sokokl/Kristysstory.html
>>
>--
>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/
>
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