Re: ooops!!! Karen, you shared the right kind of information!!!

From: kann (stew@cowtown.net)
Sat Nov 2 13:06:20 2002


Thanks Helen. I am relieved to know I didn't mess up! K

> ----- Original Message -----
From: Helen Dynda To: Multiple recipients of list ADHESIONS Sent: Saturday, November 02, 2002 12:55 PM Subject: Re: ooops!!! Karen, you shared the right kind of information!!!

Dear Karen,

You did not do anything wrong!! You shared the right kind of information - about how Melissa had been misdiagnosed for 13 years. This is exactly the kind of information others -- who suffer from adhesion related disorder (ARD) -- need to know.

Your persistence eventually led to the correct diagnosis and treatment for Melissa. Please continue to share about Melissa's recovery from her surgery for endometriosis.

Thank you for accepting the challenge to take charge of your daughter's health!!!

Helen D.

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3.) ooops!!! From: kann (stew@cowtown.net) Sat Nov 2 09:05:03 2002

I thought my post in answer to Mandy's ? was going straight to her email. Sorry folks. I see it went out to all. I am new at this, so, please don't gripe at me....I saw the post about e'ing directly to the person and I intended to do that. Sorry. K

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2.) From: kann (stew@cowtown.net) Sat Nov 2 08:53:17 2002 Hi Mandy, Melissa had laproscopic surgery Jan. 11, 2002 after being ill for 13 years. It was she and I that decided she had been misdiagnosed and we decided maybe it was endometriosis. What the doc found when he went in was her whole pelvis full of adhesions. Everything was fused together. It was a horrible looking mess. She had felt so many times like her ovaries were going to burst. This sure explained why. However, after this surgery we had a disagreement with the doctor about beginning Lupron shots. She did take one and the side effects (for her) were awful. We found Dr. Cook on the internet and sent her surgery video to him. He called back and said the endo had not been dealt with and was very visible inside her body. He believes the only remedy for pain is complete excision of all endo. So, we flew out to CA. and she had another lap surgery Sept. 26th. I also have a copy of that surgery video. She had more adhesions, also. He did laser all the endo and cut out endo that had "bored" into her sides. Those places looked like holes in her sides. She had an adhesion from the rectum to the bowel and this was causing some of her constipation problem. He cut that away. I think Melissa has one of the worse cases of endo and adhesions, however, no doc yet has recommended a hyst. She had both tubes almost closed off, they were fused to her pelvic wall. Both doc's agree that one is destroyed and one is partially functioning. Her ovaries had bloody looking sores on them and he lasered those. He did a uterine suspension, as she felt like "something is falling out". Just lots of things were accomplished, now we are anxious to see the results. I don't know how old you are or who you doc is, but be informed, careful, not quick to make decisions, etc. Lots of doc's out there (sorry) are just so unconcerned. If they weren't, Melissa would have had help years and years ago, cause I have taken her to tons of doc's. They kept telling me she had Crohn's and she needed to "accept her illness". No one ever said "maybe we should go inside (lap) and see what is going on". And, I had no idea about a lap procedure until I came across the endo web site. You have to be your own doc---they are just a tool once YOU decide what is wrong and what to do. Good luck. Let me know if you need further help. Hope this has helped you some. Karen

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1.) From: MndyWrd@aol.com To: Multiple recipients of list ADHESIONS Sent: Saturday, November 02, 2002 8:26 AM

I have just found out about this website, what surgery did Melissa go through. It is just I have been been diagnosied with endemetriosis and the consultant says that I would have to have a full hysteretomy, ovaries etc. I am curious as to what I have in front of me. Any info would be helpful

MANDY WARD


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