ENDO Messages for February, 2007: Re: Endometriosis stage 4

Re: Endometriosis stage 4 - terminal?

From: Teresa (anonymous@obgyn.net)
Sun Feb 25 11:01:19 2007

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Yes Susan, it is entirely possible to have a terminal endometriosis. My daughter is recovering from her first surgery. She went 10 years after being told she had endometriosis, without seeking further medical counsel. When she saw her belly growing the last few months she finally went in to consult her doctor. He did blood tests that showed she was in the early stages of cancer (abnormally high tumor markers), and a CT scan which showed a mass growing in and amongst her organs, then referred her right away to a gynecological surgeon. Oh and by the way your friend can always ask to see her scans and lab results and medical records, they are not withheld from her...few people realize they have the right to have access to them. Anyway....four days ago my daughter had her surgery. What was supposed to be a one and a half hour surgery took nearly 5 hours. When the surgeon finally came out to talk to us he told us the devastating news of what he found. The endometriosis (what he thought might end up being ovarian cancer)had developed into an endometrioma--a solid mass that encompassed the ureters,ovaries, uterus, bladder, colon, rectum,and invaded the vaginal wall. He said that it had cemented itself inside of her so solidly that when he went to lift out just the uterus it was attached to everything else. He had to chisel it out and dissect out the ureters--which caused the urine to be pretty bloody for a couple days. He said lifting out each organ was like pulling out a block of wood. He said that he chiseled out as much of the material that he could, but it would be impossible to remove it all without doing major reconstructive surgery. As it was, he cut out the top of the vaginal wall and resectioned it and also took a flap of the peritoneal tissue and created a new pelvic floor. He put her on 6 months of progesterin (sic) to suppress the remaining ovary to create a false menopause to keep the remaining endometriosis that could not be removed, from growing and attaching to other tissues. Every day is precious, and if you are diagnosed with anything...DO NOT let it go...and if you dont trust the diagnosis go to two or three other doctors, your life is worth any cost.

At Fri, 17 May 2002, Susan wrote: >
>I have a friend who has told me the following about her condition:
>
>"I have a chronic disease, Endometriosis stage 4 with severe
>complications right now. I have it in my bowels and now it is
>effecting the Central nervous system. The medicine that I'm taking is
>giving sucha bad reaction and is giving more neurological problems! I'll
>need $10.000 to have surgery with Dr. Cook an Endo Specialist in
>California.
>My family doc was very sad because he can't help me anymore.
>He said....I can die because of the severe complications that I have
>right now. The insurance co. said that it's too expensive to cover
>any treatment."
>
>I have known many, many people with Endometriosis- but never heard this
>before. I am concerned this is not a true story and a scheme for money,
>can anyone verify that this could be true? I would appreciate it. I do
>not know enough on the subject to know for sure, and what I have
>researched online seems to make me think this person is lying.

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