ENDO Messages for April, 2004: Re: A Cure for Endo - There was an awareness march in 2000

Re: A Cure for Endo - There was an awareness march in 2000

From: Endo (anonymous@obgyn.net)
Tue Apr 27 13:40:29 2004

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I found two interesting websites. The first one is: http://groups.msn.com/SusansEndometriosisStory/_whatsnew.msnw

She's got some pretty good info on their and is a fellow endo sufferer. She advises people to file complaints with the medical board regarding doctors who misdiagnose, which I'm sure has happened to all of us, me included.

http://www.obgyn.net/endo/walk/endo_walk_summary.htm

The second website is a report on the last endo awareness march which took place in March 2000 in Washington, DC. It looks like it was supposed to be an annual thing, but I havent seen any marches here on endometriosis. DC just had this women's march this past weekend and of course the good old annual IMF march.

The report is apparently part of this website. This website was very involved with the march. I'm curious to know when the next one will be.

Anyways, I dont know about you all, but I find it very embarrassing to tell anyone about my situation. I've reserved the conversation to close friends and for people who dont understand, I just tell them I had a little ol' cyst. That's about as far as I like to go with the explanation.

At Tue, 27 Apr 2004, caryn wrote: >
>At Tue, 27 Apr 2004, Endo wrote:
>>
>>I'm sort of responding to Dene's message. What are doctors, researchers
>>and legislators doing to find a cure or better therapies for endo? When
>>people ask me what's wrong with me, I dont even know what to say b/c
>>they never heard of the disease and I'm getting tired of explaining it,
>>so I dont. In a country where technology has surpassed human
>>imagination with cloning and ovary transplants and such, you would think
>>someone, somebody, would have bothered to help women in pain, women who
>>have resorted to getting hysterectomies and one, two, sometimes ten
>>painful surgeries in search of relief. I understand there was a march
>>in washington several years ago for endometriosis. I also understand
>>that Daisy Fuentes is a spokeswoman for endometriosis (although I havent
>>seen her speak and have no idea what she's done). What can we do to
>>help ourselves? Should we write to congress people? Organize another
>>march to bring awareness? I called the endometriosis association
>>offering/volunteering my assistance and I have not heard a peep from
>>them. Where can we funnel our energies toward change?
>
>I couldn't agree with you more!!!!!! We need to do something to be heard
>to show awearness about the disease. Not enough people(women) know
>about endometriosis and it should be talked about just as much as breast
>cancer! I try my hardest to educate everyone I know about the disease
>but there has to be more we can do than just talk about it. We need to
>be heard by EVERYONE!!! We need to share our stories so that people can
>truly understand what it is that we go through every day of our lives!
>We have the power to change things!!
>God bless you all

Next message: anonymous@obgyn.net: "Re: My Endo Experience"
Previous message: Endo: "Re: Endo; fertility and bowel concerns"
In reply to: caryn: "Re: A Cure for Endo - We're with you Dene"
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