Re: An endometriosis story to share with you all....To JoCee
From: Kermit (anonymous@obgyn.net)
Mon Mar 27 09:35:58 2006
JoCee,
I think you bring up a nice topic for debate for all of us. I took a
look at the photo that you pointed out of the barium enema procedure,
I'm not trying to be a doctor with my response, but this is my opinion
on the whole thing...
That photo does not show endometriosis lesions directly. It shows bowel
wall compression. When a scan like that shows a narrowing or
compression in the bowel the patient has to go to surgery for
investigation. Endometriosis was most likely found to be the cause of
the compression when they performed her "laparoscopic endometriosis
bowel resection" to fix the bowel wall compression that they saw on the
barium scan. Now they can label the picture with "bowel wall compressed
by endometriosis" because they know the cause (post laparocopy).
A barium scan can show narrowing, bulging, blockages, some adhesions, or
other bowel problems. It can even be used to take a look at the
appendix. But, I have never read or heard about it directly diagnosing
endo by seeing actual lesions on the bowel. Its use would also be
limited to just seeing bowel problems for endo and it is HELL to go
through. (I had one years ago for suspected appendicitis.) Now with CT
scans and MRI's, some of these other problems can be diagnosed less
invasively. These tests cannot diagnose endo though.
There has never been a test other than a laparocopy that can
definitively diagnose endometriosis, its severity, and enable the
surgeon to see all the areas affected. A Barium scan can diagnose a
bowel problem, but the cause of it may need to be investigated,
especially if they suspect endo. This patient had a prior history of
endo, therefore it was susupected to be the cause of the bowel
compression and then verified by the laparoscopy. The Barium scan was
just the "overview picture" of the problem prior to surgery.
If you have a bowel problem, then a Barium scan can be used to look for
it. But, I don't think that we will ever see gynecologists routinely
ordering them for endometriosis diagnosis though. They will still
perform laparoscopies since it is the mose encompassing and only
definitive diagnosing tool to find it.
My post is definitely not meant as an attack on your post. In fact, I
think you brought up a really good topic for debate. This is what this
forum is all about. This is just my opinion. Thanks for listening and
I hope you have a pain free night:)
At Sun, 26 Mar 2006, JoCee27 wrote:
>
>Kristy,
>
>Surely endometriosis is only diagnosed through Lap but her endo was seen
>first on her bowels by barium x-ray. See my website for pictures of
>endo appearing during a barium x-ray
>http://com3.runboard.com/bendometriosissupportgroup.ffaqforwomen.t6
>
>Also on my website you will see photos of endometriosis winding into an
>ovarian cyst and cancer was fused inside. Same link as above.
>
>JoCee,
>
>The only sure way to diagnose endo definitively is thru laparoscopy not
>ultrasound or a barium x-ray or any other kind of radiologic procedure.
>
>Also, pls take a look at this link that I'm posting:
>http://www.hcgresources.com/malignant.htm
>
>It does touch on some of what you said about that endo can be come
>cancerous but pls read the rest of the article b/c the explanation on
>this site is fantastic.
>
>Also, the main thing that could happen with endo left untreated
>especially on the colon or bladder for example is that it can eat thru
>those organs, and of course the ultimate if left untreated is a ton of
>pain.
>
>Endo on its own is a benign condition and doesn't kill physically. It
>does have characteristics similar to cancer (which may tie in to the
>above for some women).
>
>If your friend has never had a lap she doesn't know for sure that she
>has endo.
>
>Click on the home page and you can find lots of other info on this site.
>And you can also find the Survivor Letter link on this site.
>
>One of the reasons we are having a hard time getting the word out about
>endo and to have it taken seriously is b/c of things like this in your
>friend's story so pls be careful when it comes to what you hear from
>others.
>
>B/c sometimes the ones telling their story don't know all the facts
>about endo.
>
>At Sat, 25 Mar 2006, JoCee27 wrote:
>>
>>To all of my endoangel friends on this forum I'd like to share the story
>>of a woman who is close to our family that is currently dying from endo.
>>
>>The woman I am referring to, we will call her "Mandy". Mandy is
>>55-years-old. She was told several years ago that she had
>>endometriosis. She did not have a lap to confirm it. It was confirmed
>>through ultrasound and barium x-ray. Her endo was also accompanied by
>>ovarian cysts. Doctors made her feel that her endo was nothing to worry
>>about as long as it was not causing any severe pain or problems. The
>>pain and discomfort that she told her doctor about "pain with bowel
>>movements, pain during urination without presence of infection,
>>abdominal pain, painful periods, and irregular periods" were blamed on
>>IBS. Mandy is now weeks away, if not days, from dying. Mandy has
>>cancer and the cancer has developed in all of the areas that
>>endometriosis has attached to. Mandy also has cancer on her brain and
>>in her lungs. The endometriosis went untreated and blamed on other
>>things for over 20 years. Mandy's endometriosis is on her bowels,
>>bladder, ovaries, kidneys, pelvic and abdominal wall, the lower portion
>>of her lungs, and her brain. All of these areas are now cancer. So
>>when a doctor tells you that endometriosis is nothing to worry about and
>>he/or she refuses to do a lap swearing that you don't need it, please
>>think of Mandy. Mandy's case is being confirmed as "Endometriosis
>>Kills" and she is proof of it.
>>
>>--
>>ENDOANGEL JOCEE
>>
>>Endometriosis Online Support Group
>>http://com3.runboard.com/bendometriosissupportgroup
>>
>>Average People Group
>>http://com1.runboard.com/baveragepeople
>>
>--
>=====
>Kristy :)
>
>http://www.geocities.com/sokokl/Kristysstory.html
>
>--
>ENDOANGEL JOCEE
>
>Endometriosis Online Support Group
>http://com3.runboard.com/bendometriosissupportgroup
>
>Average People Group
>http://com1.runboard.com/baveragepeople
>
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