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Re: An endometriosis story to share with you all....Jocee
From: Sudsey (anonymous@obgyn.net)
Sun Mar 26 22:52:24 2006
Jocee~ I am so sad to hear about this family friend. The reality is
that endometriosis is the same tissue that lives within the uterus and a
fact that we can get uterine cancer means a fact that endometriosis can
and has in some turned cancerous. I will never forget the first forum I
was on where a member had her endo lesions go maliganant. She was
another one of those stories we never want to hear that happens she too
had been ignored on many compalaints over the years. I remember being
new to endo and new to that forum when her story broke. Rare or not it
puts us all at some increased risk. I was told IBS as well and Thanks
above I wasn't willing to so readily accept that diagnosis that in the
end turned out not to be true and had I listened I'd have ignored true
serious gastric problems myself. While some love to stand aside
watching and waiting for things to change in due time many are being so
wrongly treated like your family friend was. My prayers are with you
and your family Jocee I can imagine how frightening this all is for you.
All my best
Sudsey
At Sun, 26 Mar 2006, JoCee27 wrote:
>
>ELAINE,
>
>The black and white photo--7th one down--on that webpage IS a barium
>x-ray photograph where the endometriosis showed up. All of the color
>photos are from surgery which you will note is indicated in the post
>title "Surgeons Photos of Endometriosis." I happen to luck up on the
>photo research to find one where the endo had been captured on an x-ray.
>
>When I spoke with a member of "Mandy's" family tonight she told me how
>this all happened was: "Mandy complained of the bloating, painful
>periods, painful urination, pain when having a bowel movement, and
>abdominal pain. The doctor told her she had IBS, ovarian cysts, and
>wouldn't doubt if a little endometriosis was going on (without doing a
>lap to verify the endo). The doctor told her that the pain with periods
>(how many of us haven't heard this part) was normal, would get better
>with age and time, and that the pain when urinating was probably coming
>from being inflammed from IBS which pushes on other organs etc."
>
>"She was treated for IBS continuously with no emphasis placed on endo at
>all because she was told it was nothing to worry about. Everytime Mandy
>went to the doctor or to ER about pain she was told it was IBS. Doctors
>focused more on the already diagnosed problem rather than doing tests to
>confirm another problem. Everything was always IBS. When Mandy went to
>ER for abdominal pain, they found a bowel obstruction and had to do
>surgery. Mandy ended up having a bowel resegment and she was told her
>symptoms were still IBS. Years after that she had abdominal pain, went
>to ER, and a barium x-ray showed endometrial adhesions. By the time
>doctors opened her up to remove what they thought was inflammed bowel to
>do another bowel resegment, they found that her body was so eaten up by
>endometriosis that it was like twine zigzagged throughout. The only
>thing they could do was stitch her back up because if they cut through
>all of that she would bleed to death. So when cancer took over Mandy's
>body, doctors confirmed that the cancer was found in every place where
>endometriosis had attached."
>
>I hope that provides a better explanation. But there is a doctor
>treating Mandy now that says all of this could have been avoided if
>someone had taken the time to listen, take Mandy's complaints seriously,
>and took the time to do tests at the onset. The doctor has plainly
>stated that Mandy was not cared for properly and that because of the
>negligence of doctors over the last 17 years, Mandy doesn't have a
>fighting chance.
>
>At Sun, 26 Mar 2006, Elaine wrote:
>>
>>joCee,
>>Thanks for sharing the photos! Very interesting. I am just a little
>>confused though. You say that the photos on your website (under the
>>link you provided) are photos of endometriosis appearing during a barium
>>xray. But they are pictures taken by surgeons. And the pictures to me
>>look too clear and colorful to be from a barium xray, which would be
>>black and white?. I also see what looks like a laparoscope appearing in
>>some of the photos. Are you sure these are from a barium xray? I wasn't
>>aware that they were able to see that much with a barium xray. I had
>>one done years ago when I was having symptoms but no diagnosis yet and
>>nothing showed up on the xrays. But when I had a laparoscopy endo
>>showed up on my colon and all over my uterus and ligaments, bladder, and
>>ovaries.
>>I do agree with your overall message. Endometriosis is a serious
>>disease that needs to be treated and taken seriously. Left untreated,
>>there is an increased risk of cancer, but there is also the risk of
>>organs being strangled and adhered together, making them hard to
>>function properly, and of blood supply being cut off, as well as endo
>>eating through the bowel wall and other places. I know a woman who had
>>a total hysterectomy with removal of both ovaries, was started on
>>estrogen replacement right away, and five years later after years of
>>continuing pain and no one believing her that she still had endo, she
>>found a doctor that did another lap and found that she still had endo
>>all over her intestines and adhesions strangling them in some places.
>>She had been having severe constipation and digestive issues.
>>I also found these articles regarding endometriosis and cancer that do
>>point to a correlation between the two diseases, though they mention
>>that endometriosis itself does not cause cancer. More likely, the
>>conditions that led to the endometriosis also increase the risk of
>>cancer (ie exposure to environmental pollution such as dioxins, and
>>exposure to hormones from foods we eat like poultry and beef). Here
>>they are:
>> http://www.infertilityphysician.com/endometriosis/cancer.html
>>http://web.mit.edu/newsoffice/2005/endometriosis.html
>>
>>Good discussion going here guys!
>>
>>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
>>>
>--
>ENDOANGEL JOCEE
>
>Endometriosis Online Support Group
>http://com3.runboard.com/bendometriosissupportgroup
>
>Average People Group
>http://com1.runboard.com/baveragepeople
>
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