shakes
Junior Member
THE BEST THING YOU CAN WEAR IS A SMILE
Posts: 79
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Post by shakes on Jul 14, 2006 16:05:33 GMT -5
not everyone understands what endometriosis is if you would like use this video presentation you can show family and friends go to this site and click on audio-visual presentation www.endocenter.org/have a great day
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meka
Full Member
Posts: 164
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Post by meka on Jul 17, 2006 1:12:53 GMT -5
Thanks for the link.
The video is not bad. It's a decent primer for anyone just beginning to learn about endo. It says what many websites say, but with video attached.
The only thing in it that I've never heard is that adhesions are actually sticky blood that is binding some organs together. I've always thought the adhesions are new tissue, not blood.
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Post by positivity on Jul 19, 2006 20:54:42 GMT -5
That was a really helpful sight, thanks. I'm glad that it explains that it can be really helpful b/c I feel like some people think that we just want attention or something and that we make a bigger deal than what it is.
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shakes
Junior Member
THE BEST THING YOU CAN WEAR IS A SMILE
Posts: 79
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Post by shakes on Jul 20, 2006 3:26:45 GMT -5
NO ONE TOOK ME SERIOUS UNTIL I DECIDED TO HAVE A HYSTERECTOMY THEY WOULD SAY THINGS LIKE DOES IT REALLY HURT THAT BAD? AND ARE YOU SURE YOU DONT JUST NEED SOME ATTENTION?
ITS HARD NO ONE CAN REALLY UNDERSTAND UNLESS THEY ACTUALLY GO THROUGH IT THEMSELVES
I WISH THEY WOULD TALK MORE ABOUT ENDO I HAVE WRITTEN TO TALK SHOWS LIKE OPRAH AND DR.PHIL BUT NO LUCK SO FAR
I THINK THEY SHOULD HAVE AN ENDO WALK LIKE HOW THEY DO FOR BREST CANCER AND STUFF MAYBE THEY DO I JUST HAVENT HEARD ABOUT IT
BUT IT HELPS TO HAVE INFO AND THINGS LIKE THE VIDOE TO HELP EXPLAIN TO OTHERS WHATS GOING ON INSIDE OF US
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Post by ouchy on Jul 20, 2006 11:02:24 GMT -5
Shakes, I think the walk-for-endo idea is a great one! Would be cool if there were a way to get that started!
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Post by erzulie on Jul 20, 2006 11:58:26 GMT -5
Exercise is good for endometriosis too....the question is, where would the money go? Awareness? Research? What kind of research? Personally I'd want it to go to awareness first and foremost. A lot of research being done on endometriosis is stuff I don't agree with from a moral standpoint.
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shakes
Junior Member
THE BEST THING YOU CAN WEAR IS A SMILE
Posts: 79
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Post by shakes on Jul 20, 2006 20:22:50 GMT -5
MAYBE WE COULD ALL E-MAIL OPRAH AT THE SAME TIME YOU PROBABLY HAVE HUNDEREDS OF MEMEBERS HERE IMAGINE IF EACH ONE OF US WROTE TO HER SHOW ON THE SAME DAY THAT WOULD DEFINATLY GET SOMEONES ATTENTION, THEN MAYBE SHE WOULD DO A SHOW ABOUT IT AND HELP GET THE WORD OUT SHES SO BIG ON T.V SHE WOULD PROBABLY KNOW HOW TO ORGANISE A WALK, THERE MUST BE SOME WAY TO PULL IT ALL TOGETHER MAYBE IT CAN BE AN AWARNESS WALK PLUS RAISE MONEY
THERES SO MANY GIRLS IN PAIN WITH BAD PERIODS WHO DONT HAVE A CLUS WHATS GOING ON I HAD 3 SURGERYS BEFORE I FOUND OUT WHAT WAS REALLY WRONG WITH ME, I DONT EVEN THINK ALOT OF ARE DR.S UNDERSTAND THIS DISEASE
THANKS FOR ALL YOUR REPLYS HAVE A GREAT DAY
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Post by meldart on Jul 21, 2006 13:14:32 GMT -5
I think it's a great idea, we have somethings like that in the UK but I think it would be wonderful if we could all organise something.
They are only on a small scale and you don't get the advertising or coverage that you do for walk for life and other events
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meka
Full Member
Posts: 164
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Post by meka on Jul 23, 2006 21:23:07 GMT -5
shakes, I have been thinking about writing to Oprah for quite some time. I think it may be worth a shot for many of us to write to her. It will make them pay more attention . . . instead of just thinking that a couple of women are looking for some pity.
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Post by masagnu on Jul 31, 2006 16:11:27 GMT -5
My sis and I have stated to get a walk here in Baltimore Maryland. If anyone wants to have one in there town and I will let you know what you need to do.
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Post by masagnu on Jul 31, 2006 16:12:34 GMT -5
We have writen to Oprah and we have not heard back from her yet
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louise
Junior Member
looby lou baby susprise
Posts: 70
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Post by louise on Jul 31, 2006 16:35:38 GMT -5
hi just watched the video clip and it was really interesting, my partner even watched it and he said it helped him understand what it is i suffer with, and some of the things that we talked about on here makes sense, thanks x
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Post by Hillary on Aug 4, 2006 13:30:12 GMT -5
Thank you Shakes for posting this video, I watched it then had my husband watch it, he kept telling me i know what it is I know what it is and kept telling him how do you know if I don't even fully understand what it is. So he watched it and made him understand why I am in pain and when I am in pain know he understands a little better, just righting this makes me cry because we have only been together for 3 years and when we first got together i didn't have these problems and when i started our lives changed becasue I know we are restricted as to what we do, our sex life changed becasue it hurts to much , we don't go out as much becasue it hurts, i spend more money on organic foods and medication so we don't have as much money and we already don't make enough. It hard very hard. Thank you again for posting this, my husband is more understanding, he always called me a hyporcondriac but he doesn't anymore.
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Post by erzulie on Aug 21, 2006 19:46:45 GMT -5
I found another good resource for explaining to tohers what endometriosis is: en.wikipedia.org/wiki/Endometriosis#Cause_of_painThe article in general is lacking information from a lot of research that has been done, so I wouldn't call this the greatest source of endometriosis information, but the general definition at the beginning does a good job of concisely explaining what the disease is. Here is what it says: Endometriosis is a common medical condition affecting an estimated 89 million women of reproductive age around the world. With endometriosis, tissue like that which lines the uterus (the endometrium, from endo, "inside", and metra, "womb") is found outside the womb in other areas of the body. Normally, the endometrium is shed each month through menses; however, in endometriosis, the misplaced endometrium has no way of leaving the body. The tissues still break down and bleed, but result is far different in women and girls without the disease: internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue result. In addition, depending on the location of the growths, interference with the normal function of the bowel, bladder, intestines and other areas of the pelvic cavity can occur. Endometriosis has also been found lodged in the skin, the lungs, the diaphragm and even the brain. Next time someone tells you they don't udnerstand how it can hurt so much, point out that you are experiencing internal bleeding every month!
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Post by ouchy on Aug 21, 2006 19:52:55 GMT -5
Love it! Great anaolgy w/ internal bleeding! Thanks!
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