I'd like to get a dialogue going about what we still need to see in the PCOS community. I've decided to ask this question because of some of the (what I found amazing) information I discovered in my recent interview with the PCOS research group at Northwestern University Feinberg School of Medicine in Chicago. Needless to say, I learned quite a lot...information that I don't think has been publicized at ALL.
That said, let me ask this...
What information, what resources, are we missing in the PCOS community? We have a really great secular (for lack of a better word) base of knowledge and resources (things like SoulCysters, PCOS Today, PCOS Support, etc.), and a few medically oriented resources (everything from 4women.gov to Infertility Tmies).
But this is where I want YOUR input. What more do we need? What resources are untapped? What do you need? What information is needed? In what forms? What would you like to see these "experts" in the PCOS community provide to you?
I'd love to hear your input. Leave a reply to this thread, or e-mail me at PCOS Today.
Thanks! --- Linda, PCOS Today editor
__________________ Linda Harvey
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I mentioned this on a different thread but I would like to see something offered like the mymonthlycycles website where we could log our symptoms, meds, conditions and keep track of this information and it would be so nice to be able to chart it or see how it fluctuates over a period of time. mymonthlycycles does offer something similar but its focused around cyles and I think one for general health would be even better! It would be great to print out and take to the doctors office too!
__________________ - Jen -
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I think the only thing that is missing is mainstream media. I have seen lots of television programs out lining and telling the stories of women with other fertility, hormonal, and genetic syndromes diseases etc. but I have yet to see PCOS being displayed on talk shows, TV specials and things like that. If there were any "movement" for me to get involved with I would gladly volunteer my time to raise awareness. I would be willing to even stand in a mall in one of those little booths with petitions, pamphlets, information, and selling support bracelets and things. No one I know personally knew anything about PCOS until I was diagnosed with it. I think the saddest part of that is my grandmother, mother and aunt suffered a lot longer than me with the symptoms and still have not been diagnosed. It took me 13 years to get a doctor who was willing to go the extra mile for me. I read on the forums a while back that some Cysters were trying to get on Opra, Montel, and Dr. Phil, I would be more than willing to go tell my story.
I second what looking4hope has expressed, although I'd like to see more done internationally to create awareness of PCOS. I know most of you guys are based in the U.S. but there has to be some way we can get the word out there. I can recall to date only ever seeing two magazine articles on PCOS in a british publication called NOW. Kind of like your People or US magazine, and they weren't ALL that informative. There are cysters on the boards from all over, Oz, South Africa, the U.K. and me (for example) in Spain. Is there any way this could be a more international affliction than seeing all the women who support each other here regardless of age, location or religion?
I'd love to see more international awareness of PCOS, and I'd definitely love to get involved in any way possible.
Also, I don't know if this is already happening elsewhere but wouldn't it be an idea to bring doctors together with sufferers of PCOS in gatherings/ conferences etc... so they can actually see for themselves what we go through and learn from us to enable them to better diagnose those cases that come their way. So many doctors are not fully informed about this syndrome and so many women go through so many doctors before getting the answers the need and want. Some of us are lucky, we get diagnosed fairly early, but there are women here who have lost years going from one medical professional to another without being told what they have. And if this is meant to be the nº1 endocrinological disorder among women, I amazed that there is still such a lack of correct (and standardised) information in the medical community.
Sorry if I've gone on a bit long, I felt all that needed saying!
Best wishes,
Danielle.
__________________ Danielle (28) DX: Hypothyroidism - May 05/ PCOS & IR Oct 05 Meds: 1x850mg Metformin + 1x75mg Levotiroxin + Diane 35
"If you can keep your head, when all about you are losing theirs, it's just possible you haven't grasped the situation"
Well said Danielle!
I went to over a dozen doctors TTC after I got married at 20. I am now 28 and still no baby, I feel like I am missing my window. I was just dx 2 years ago.
I totally agree with the lack of articles in the mainstream media - those I find tend to be 'I can never have children' or 'I'm fat and hairy' articles. None ever speak of the positive sides or explain that not everybody has all the symptoms. You're instantly left thinking that the world has ended.
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I'd like to get a dialogue going about what we still need to see in the PCOS community. I've decided to ask this question because of some of the (what I found amazing) information I discovered in my recent interview with the PCOS research group at Northwestern University Feinberg School of Medicine in Chicago. Needless to say, I learned quite a lot...information that I don't think has been publicized at ALL.
That said, let me ask this...
What information, what resources, are we missing in the PCOS community? We have a really great secular (for lack of a better word) base of knowledge and resources (things like SoulCysters, PCOS Today, PCOS Support, etc.), and a few medically oriented resources (everything from 4women.gov to Infertility Tmies).
But this is where I want YOUR input. What more do we need? What resources are untapped? What do you need? What information is needed? In what forms? What would you like to see these "experts" in the PCOS community provide to you?
I'd love to hear your input. Leave a reply to this thread, or e-mail me at PCOS Today.
Thanks! --- Linda, PCOS Today editor
we need the real life stories of us. of the women who wake up everyday and see the scale goin up without warning with diet n exercise. we need to show the world the clumps of hair that fall out with brushing.. the broken strands all over the sink. we need to show the world the sudden breakouts, we need to show them us without the depilitories and razors...and most of all...the pain..yes they need to feel the damn pain. the physical pain, the emotional pain, and the spiritual pain. we need to show them the bouts of uncontrolled tears as we look in the mirror and dont recognize who stares back at us. this is what the world needs today.
i have yet to see a pcos article in a magazine. i have yet to see a news program or discovery program or a talk show about this disease. i have yet to see a walk or run to support our cause. if millions of women suffer from this...doesnt that make pcos almost as popular as cancer? i mean come on...its like a cancer.
to tell you the truth since i was diagnosed theres been many times when i wanted to give up. many times when ijust couldnt stand looking in the mirror and seeing this pudgy, hairy, bald girl staring back at me. i would cry and scream and ask God why? why did this have to happen to me? what did i do to deserve this? i ate healthy, i exercised, i went to church! but no....the world is unkind. blame it on genetics or whatever. pcos is something i have faced...but i will never accept it.
i feel like a sorry excuse for a woman. and yet when i reach out for help and support i get nothing back. nobody understands it except my cysters on here. not my boyfriend, not my friends, not my family. heck it took over a dozen doctors to get a diagnosis. and yet theres still so much more happening. pcos needs media, it needs more research. what causes it? and how can they predict it better? and most of all, how can they stop it before it gets out of hand! i mean come on! i went from pcos to endometriosis to now awaiting my results to see if i have ovarian cancer. what else is there? HUH!?!!!
i can see us now, all standing in a row..our round bodies, heavy midsections, fuzzy faces, and thinning hair. we are beautiful inside and we are still beautiful outside. but in this day and age...what can we expect to be accepted by society? i gained 40 lbs in a matter of about 1 month and 2 weeks. yep. most people think wow she blew up..must be those big macs...nope..how about grilled chicken and veggies? and weight training and cardio! yep i still blew up. still morphed my body to the point where i cant even stand myself. i am disgusted. and most of all im disgusted in this society... in this world...where nobody listens to us...arent there enough cases now? from what i heard...whats the statistic? 2 in 10 women in the us have this? ok thats alot!!!!!!!!!!!
im just sick and tired of the pain. the agony. the stress.
my soul is tired.
yet i continue to go on...
why??
because deep inside i believe im still me. its just another thing God has graced me with...to test my strength. to make me stronger. to heighten my senses....
oh yea..and we should all donate for a conference somewhere. yep. even put out advertisements for other women to come. its time the world saw this for what it is..cause its not in our heads!!!!
im so sick of hearing that!!!
thatll be the name of my article i write for a mag... "its all in your head"
We need more awareness in the media. We need to get Cysters on shows like Oprah and the Today show. I have seen PCOS mentioned in articles, but it's treated as a minor fertility complication.
I also want to know if anyone is studying PCOS and it's long term health implications. If you do find info about it, it's usually from a fertility standpoint, but what will it be like to have PCOS and go through menopause?
we need the real life stories of us. of the women...
I'm working on that one. Give me about a month.
Quote:
Originally Posted by DivineMadness
i have yet to see a pcos article in a magazine. i have yet to see a news program or discovery program or a talk show about this disease. .
I see quite a few (and have been in quite a few). And Ashley from this site is currently featured in a Discovery program, and the whole segment is about her PCOS.
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Hey, SoulCysters! Need to eat more veggies, but can't find recipes??
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I also want to know if anyone is studying PCOS and it's long term health implications.
People 'are' studying it, and it's 'been' studied. There are a bunch of articles in RESEARCH ARTICLES FORUM about long term risk. You can also use PUB MED to find studies I haven't posted. Clinical Trial watches can tell you what's currently being studied.
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Hey, SoulCysters! Need to eat more veggies, but can't find recipes??
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is there anyway we can get a copy of that discovery program? i would like to see it!!
Contact Ashley. There are plenty of posts about it in What's on your mind, Cysters Initiatives, and Media Sightings. It's been running a LOT, and has been on the air for months.
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Hey, SoulCysters! Need to eat more veggies, but can't find recipes??
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Contact Ashley. There are plenty of posts about it in What's on your mind, Cysters Initiatives, and Media Sightings. It's been running a LOT, and has been on the air for months.
i cant believe i never saw it! im always watching discovery channel!!!!
What's Missing in the PCOS community? 
