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Re: Am I crazy?.....Oprah
From: Katie (anonymous@obgyn.net)
Wed Jan 10 18:00:40 2007
This urks me too. I've written to Oprah several times over the past few
years with absolutely no response. 70 million women is not enough to do
a show on Endo to present the myths behind this disease? I just sent an
email through oprah.com. Maybe if enough of us do...who knows?
Having a bad night for pain,
Katie
At Wed, 10 Jan 2007, Elisa wrote:
>
>Dear Sisters~
>
>This topic is one just like D says that makes me do more than GRRRRR.
>In 1994 I spoke with a few people who called back about my situation
>with endo being misdiganosed at that time only 4 years and so many of
>my organs had been removed and the Dr.'s said it was in my head.
>
>I wrote her when I found out at that time 5 million women had this
>disease and I was in despair because I was single and it turned out
>urologically it was everywhere and my right ureter was like cement.
>If I, like all of you didn't keep pushing (which is so sad and horrible
>when we can barely work let alone hold down a job) is the worst time to
>be our own advocate.
>
>The producers from her show called back after verifying my story with
>many who where close to me and said "This topic doesn't offer the
>sensationalism they are seeking at this time". As you can see this many
>years later that statement has ALWAYS stayed with me and coming from a
>women of hardships (while I know it's not just her decision).
>
>I am your stageivplus women who this disease like many more sisters who
>are
>post hysterectomy etc. that it still wreaks havoc in my life but from a
>different phase of it. No matter where we all are every STAGE of this
>disease counts just as important as the first. In the end there is no
>cure, just different and temporary ways to manage it. I can accept
>this. What I can't accept is the numbers are rising now up to 15
>million in 2006 and that our
>14 year old daughters, nieces and friends who have daughters have to
>ultimatley make a decision in time to take Lupron as well. That makes
>me sick! If
>this is hard for us to take how are they supposed to do that and be a
>teen with a whole set of problems in itself?
>
>I think somewhere we all should come together (literally and I can't
>stand or walk much either these days) and stand before Capitol Hill or
>Stand united infront of a place where our faces can be seen and maybe
>taken serious. This is just getting too out of control.
>
>The closest chance we have right now is with Montel. I say that because
>I heard there was something recently where his young daughter is having
>abdominal issues and just MAYBE this may hit close enough to home for us
>to be heard.
>
>I will stand with all of you through this walk. You tell me what you
>need and I will be there! Thanks for listening. Please don't give up
>because you don't understand or other's do not understand. This disease
>is real and it is happening to us. I heard this quoted recently on a
>show and this fits perfect..."If we believe, we can achieve!" I don't
>know how but I do believe God will grant us favor somehow and somewhere
>when we least expect it.
>
>You all have a wonderful night. I believe you!
>
>--
>Elisa
>
>At Wed, 10 Jan 2007, D wrote:
>>
>>This isn't the first time I've heard complaints about how Oprah totally
>>IGNORES endo. You aren't crazy, that doctor was out of their league,
>>and how they got on Oprah I don't even want to know.
>>
>>--
>>Do you have the contact info? If I saw that show I would definitely
>>write, and if you post it here, I will anyway!
>>
>>You are not nuts! and so if it isn't "uncommon" - it still isn't
>>"normal"!! Jeebus that just makes me mad!
>>
>>And of course there was no mention of how motrin (especially at the
>>doses they recommend for endo) is itself a dangerous drug - that stuff
>>gave me ulcers.
>>
>>GGGRRRRRRRR!!!
>>
>>That doctor should have told that girl to find an endo specialist who
>>will remove all of her endo by excision. It's a good example of how
>>just because someone is an obgyn it doesn't mean they know diddly about
>>endometriosis.
>>
>>And thanks for a chance to vent a bit - I'm on continuous BCPs, but my
>>pain still cycles and I'm definitely "PMSing" right now. ;-)
>>
>>And how sad that her pain is considered an "embarassing question" - I'd
>>really like to see people get past that kind of thinking. Endo is a
>>serious, sometimes debilitating disease - it's nothing to be embarassed
>>about!
>>
>>At Wed, 10 Jan 2007, Alyson wrote:
>>>
>>>OK, so I was watching an Oprah episode from earlier in the week that was
>>>discussing embarrassing questions. She had an ObGyn from Cedar's Sinai
>>>Hospital on and a girl was asking her about painful cramps. She
>>>described her cramps as being so severe as to not be able to get out of
>>>bed sometimes, vomiting, and so painful as to reduce her to tears. The
>>>doctor responded by saying that this is not uncommon and she should use
>>>a heating pad and take Motrin beginning two days before she expects her
>>>period to start or go on birth control pills. No mention at all of
>>>endo, fibroids, etc.
>>>Now, from what I've read it is completely not normal to have such severe
>>>cramping with your period and that kind of pain is indicative of
>>>endometriosis or fibroids. I want to write in and pitch a fit, but am I
>>>nuts?
>>>Alyson
>>
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