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Re: I'm on a quest to inform...and I need your help!!! (long, as usual for me :) )
From: paula (anonymous@obgyn.net)
Thu, 29 Jun 2000 18:43:26 -0500 (CDT)
Thank you barbara, i have began to get better, and while i will never
forget everything that has happened to me regarding my pcos (and trust
me the things in this story are the ones that are easy to talk about), i
am putting it behind me, and moving on. my sole reason for posting
this, was i want to help others. i really do.
besides, i wouldn't be the person i am had this not happened to me. "we
are the sum total of our life experiences" everything in my life,
whether good or bad, i am glad has happened. i have learned from all of
it. i have grown through all of it...and when you add it all up, you
get me. i dont want to be different than i am (at least not my inside)
i want people to me more caring and more tolerant. the world is filled
with people who are different, that is a great thing.
love, paula
At Thu, 29 Jun 2000, Barbara wrote:
>
>Paula,
>Your story really touched me. I am sorry for the little girl and the
>teen and for you, for all the cruelties, whether intentional or not that
>you had to endure. When I hear stories like yours, with the
>unbelievably insensitive actions and remarks of doctors who are supposed
>to be helping us, it makes me so sad and frustrated. Thank you for
>sharing your story, I didn't begin to have 'problems' until I was older,
>an adult so thinking of a child going through all of this is
>heartbreaking.
>I hope that you get the treatment you need. Bless you, Paula, thank you
>for sharing.
>At Thu, 29 Jun 2000, paula wrote:
>>
>>hi! no need to not quote my name, use it if you need to, it may help by
>>connecting an identity to the story!
>>
>>i never started my periods, i gained weight at an unbelievable rate, i
>>was extremely hairy all over my body. i had dark velvety skin behind my
>>neck. i was terrorized as a child because of these symptoms. i was
>>taken to a gynocologist at the age of 13 because i was not menestrating.
>>he said "we'll put her on birth control" i didn't stop gaining weight.
>>my mother took me to an "innovative" endocronoligist who suggested a
>>hysterectomy at the age of 15. i was taken to another dr. who was so
>>facinated with the hair growth on my behind and lower back and tummy
>>that he thought it best to bring in 20 medical students to oooh and ahhh
>>about my abnormalities. in fifth grade during a routine head check at
>>school, the nurse whispered in my ear " you need to wash your neck" this
>>disease can be a life shaping and life destroying thing. i was told at
>>the age of 17 that not only would i never lose the hair, i would never
>>have children. i was told it was all my fault that i was overweight,
>>after all my thyrid was normal. i was finally diagnosed with PCOS at
>>the age of 17. i was told however, that nothing could be done about it
>>and that i should take birth control pills until i was ready to
>>conceive, and the chances of my ever having children was slim to none.
>>for years and years i believed i was the victim of an extremely rare
>>disease or that it was a "mock disease" i thought i was alone. i had no
>>idea until this year (25 years old, 6 years married and desperate for
>>children) that there was a world of other women with this and that there
>>was treatment for it. i will never overcome the experiences i had as a
>>young adult dealing with this illness, but i am going to live my life
>>more informed and more empowered. only public awareness of this disease
>>will allow other teens currently going through what i went trough to see
>>past it and overcome it.
>>
>>this is my story. in a nut shell of course, i just dont have the nerve
>>to face all of it right now. the thing i would most want people to
>>know, is that this is not something that is anyone's fault, dont you
>>think we would PREFER to not be stared at, dont you think we would LOVE
>>to be thin, and beautiful....normally people with this illness, have not
>>been treated for it. when we find out what we have, and get the help we
>>need, we can get better...would you make fun of a blind person, or a
>>diabetic? how about a child with down's syndrome? we have an inborn
>>illness, one we can not make go away.
>>
>>that is what i would say.
>>love, paula
>>
>>At Thu, 29 Jun 2000, Ginger wrote:
>>>
>>>Hi girls-
>>>
>>>I am currently enrolled in a public speaking course and I have chosen
>>>PCOS as my first topic for an informative speech. My prof said "talk
>>>about something you know" and this is the first thing that popped into
>>>my head - so I'm going with it.
>>>
>>>I need some info from all of you who are willing to help. I want to
>>>integrate some personal stories along with facts and figures to really
>>>drive home my message. By the way, I am speaking to a "typical" college
>>>class, 18-22 year olds, including some frat boys (read: anti-beautiful).
>>>I have 2 main goals: inform them of the medical implications of this
>>>syndrome and try to make them have some compassion for people who do not
>>>meet the "standard of beauty". I have high hopes for this assignment,
>>>and in addition to receiving an "A" in the course, I plan on changing
>>>some preconceived ideas too! (and I expect all of you to be my
>>>cheerleaders! haha)
>>>
>>>Ok, so what I need from my cysters is this: What's your story? I need
>>>symptoms, first indication of a "problem", process of getting a
>>>diagnosis, how PCOS has effected your life, how you deal with
>>>everything, and most importantly: what is the one main point you'd like
>>>people to know about PCOS?
>>>
>>>I know I'm asking a lot from you. Please be assured that I will present
>>>your information as examples, and identities will NOT be revealed in any
>>>way. I realize that there are a lot of deep seeded emotions involved
>>>with this topic. Understand that I am really opening myself up to a
>>>bunch of strangers by talking about this "Well, you've all noticed that
>>>not only am I older than all of you, I'm also fat and hairy...here's
>>>why." Ok, maybe not exactly like that but it's gonna be scary!
>>>
>>>I really do appreciate any help you can all give me. Also, if you could
>>>tell me your favorite links for factual info about PCOS I'd appreciate
>>>that as well (research - ugh!). Please feel free to e-mail me directly
>>>or post to the forum, whatever you prefer.
>>>
>>>Thank you from the bottom of my heart! I look forward to hearing from
>>>you all!
>>>
>>>Love,
>>>Ginger
>
>--
>Barbara
>
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