Re: Am I crazy?.....Oprah
From: Elisa (anonymous@obgyn.net)
Thu Jan 11 11:32:10 2007
Katie~
That is wonderful. I believe if we all just did one thing and applied
it as a group effort it would be wonderful. What that is I am not sure
of yet, but maybe our answers will come.
I hope the hosts of this forum can lend some support as well or a Dr.who
see's these ongoing posts. Willing it away by anyone isn't going to
make
it go away and the #'s just keep rising.
I try to imagine a poor 14 year old who's body is just crazy with all
the
emotional and physical issues going on in her little life who may be
faced
with such choices.
While it may get dismissed or not talked about in the schools by the
nurses etc. I can't help but think why can't the acknowledgment start
at that level when they end up continually at the nurses office with
these bad problems.
Then you take down the road into later teens all those emotional issues
and couple that with the fact that some Dr's and or parents just dismiss
it and it keeps growing with each cycle. Then another level into our
womanhood comes before we know it in our 20's, then 30's etc...
In the end no cure but WE had to search high and low and fight to raise
awareness when we can barely get out of bed because it grows just like
cancer (so to speak) and it's too much and it's too late but we do get
to finally hear.."Sorry, you are just in-operable".
I can accept our fate. I can't accept that lack of understanding and
compassion in a society who can be made aware and the media outlets
won't hear about it. We were blessed when they listened about aids but
I am sure because the fear of contact and transmission scared them into
at least listening. Maybe them hearing that their little girl could be
faced with this debilitating disease in a world when Dr.'s can be
selective right now will raise some awareness.
Thanks to all of you...keep me posted (no pun intended:) I pray this is
the miracle of awareness we have been waiting for!
Have a great day!
--
Elisa
At Thu, 11 Jan 2007, Katie wrote:
>
>I agree with Elisa to Cc: Montel - it can't hurt. I do think it's
>appalling at the number of women with Endo and we are being ignored.
>I'll be watching posts too - I'm a little excited. All of those times
>while I sat in tears at the computer emailing Oprah with no luck - maybe
>something good will happen out of this. My husband and I are in the
>beginning works of planning an Endo benefit with local bands (we live in
>Strathroy Ontario Canada) for the summer of 2008. We had wanted to do
>it this summer but the town took a little long replying back to us
>initially. We are very excited - every little bit will help to find a
>cure!
>Katie
>
>At Thu, 11 Jan 2007, Elisa wrote:
>>
>>Hi Alyson and All~
>>
>>You let me now how and when we can do this and I am here for you too.
>>The only suggestion I would still make is to at least Cc: Montel (even
>>though he may not seem to want it) is because when he realizes #1 that
>>women have been contacting Oprah and to no avail..they may say hmmm...
>>
>>The other reason is with his experience of being sick with MS and taken
>>down to a humble place may now make him more receptive. Remember the
>>times we
>>walked and thought..It's not happening to me, I can't understand. While
>>it's
>>not the same illness the ignorance is still the same.
>>
>>Thanks again! I will look for posts as they come through.
>>
>>Have a great day!
>>
>>--
>>Elisa
>>
>>At Thu, 11 Jan 2007, Alyson wrote:
>>>
>>>Wow ladies! I wish I had been at my computer last night to see this
>>>response!
>>>I was a bit nervous about posting my feelings in the first place. I
>>>just thought, how can a Cedar's Sinai ObGyn be so irresponsible...When I
>>>hear someone that "qualified" say something (or not say anything) like
>>>that I start to second guess myself. I am happy to see that 1)I'm not
>>>nuts and 2)You all had the same reaction I did. I am all for a massive
>>>write in, but I think its going to take more than the six or seven of us
>>>that are aggravated about it on this board. Any ideas on how to reach
>>>more women about it to get a truly massive response?
>>>Alyson
>>>
>>>At Thu, 11 Jan 2007, amber wrote:
>>>>
>>>>Give me the contact details for oprah i will write in as well. Even if
>>>>im from Australia it may just help..
>>>>
>>>>--
>>>>Amber
>>>>
>>>>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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