PCOS in my life! I have it for a reason! KAT question for you too!

Brienicole · 09-15-2007, 06:35 AM

I've recently (past few years or so) become very aware of pcos symptoms and seem to keep running into other women on the street, at church, online who also have pcos. I think that I'm educated on this for a reason.

just this year alone I was discussing my symptoms with my aunt and she was very intrigued. shes in her early 40s and a few months ago she called to say she went to her doc and they tested her and found out she in fact does have PCOS. Obviously it wasn't a known or publicized disease back then and could have spared her alot of pain . She has one daughter..my cousin who I think should now be tested as she has known fertility issues.. and other symptoms. she has been diagnosed with endo but I think the possibility of both is there. Shes scared though and I'm working on that. but yeah that my aunt is just now finding this out and all because i discussed my issues with her but it took 40 years for her to finally have an answer. Now her sister my other aunt who is only 7 years my senior is getting checked out! which also furthers my belief that it is hereditary!

second case is my brother in laws new Gf. She is me but younger.. she has EVERY symptom I had and last week she came home ( she lives with us) and said guess what I do have pcos and I'm on glucophage! She also has and IUD as she is only 17 but I'm so glad she knows this early about it and knows what shes up against!

Kat this question is for you! and anyone i suppose.

So it clicked in my head that other than family I keep running into people at church and so on who when I bring up my miracle and PCOS they seem intrigued and want to know more. for some odd reason people who are undiagnosed keep running into my life who have this disease and then find out they have it.. and please I am by no means an expert, nor do i go and diagnose them myself. I just tell my story and they get interested and get checked out. now that the pcos awareness campaign is gone what else can I do? I need to do something! there has to be a reason i keep running into people with this.. what do you think my next step is?? I have to do something!

anyhow I know that I have PCOS for a reason. there are plenty I could go into but I'm really focusing on the fact that People keep entering my life who aren't aware of what it is! is it perhaps that i have pcos too to share my story and bring it to other women?

The reason I suppose I'm just now clicking is that again this week a stranger was commenting on my child and somehow we got off on a miscarriage tangent and i said well Sam is a miracle and heres why and again the whole pcos came into play and she said WOW I'm so going to the doctor and getting checked.

any ideas ... anyone??

sassyred · 09-15-2007, 12:59 PM

Brie~ maybe try putting an ad in the paper listing the symptoms & then "got PCOS?" Ya know like a warning that if they have so many of the things listed to go get checked out! Thats all i can come up with! Sorry! But I just wanted to say that I thank you for spreading the PCOS word!!

What a WONDERFUL Cyster you are!!!

tattwo · 09-15-2007, 01:24 PM

Maybe it is your purpose or your calling. When I try and tell people about, I just get blank glazed over stares. Keep doing what you're doing!!!

KatCarney · 09-15-2007, 02:15 PM

Quote:

Originally Posted by Brienicole

just this year alone I was discussing my symptoms with my aunt and she was very intrigued. shes in her early 40s and a few months ago she called to say she went to her doc and they tested her and found out she in fact does have PCOS. Obviously it wasn't a known or publicized disease back then and could have spared her alot of pain .

PCOS has been on the books for nearly 80 years - It was first described in 1935 by by two American gynecologists, Dr. Irving Stein and Dr. Michael Leventhal. So it was certainly 'known'.

Before deciding what your personal contribution to 'the cause' is, first assess how much time and/or money you want to dedicate. Also try to identify things you can complete on your own with minimal help from others. If others pitch in, that's great, but you shouldn't need to 'count' on others for your mission. You also don't necessarily need a 'budget' to work with...but from the outset, determine what and how much time/money you have to dedicate.

Also get a VERY firm foundation on the history and facts of pcos - which can frequently be very different from information that appears in magazine and newspaper articles. There is SO much misinformation out there, that I can't stress how important this part is.

In doing this research, you might identify an area that really needs attention. In my case, I found that there was a lack of a central area to find pcos research (for lay people). That's really how SoulCysters got started. We only got a message board because women started 'talking' to each other on my guestbook, so I added a message board to keep things 'neat'. Who knew it would be the 'hub' it is today.

So, in short, I would first do some major research, and get a good 'lay of the land' in terms of what's out there, in terms of resources, and 'current theory' on pcos.

One of my biggest pet peeves these days is the massive amount of MISinformation, moreso than the lack of publicity.

But you need to find what YOUR pet peeve and passion is for 'the cause' and when you do...you'll know what the next step is. HTH

Brienicole · 09-15-2007, 06:44 PM

Thanks guys.. Im definetly going to put alot of thought into it! I dont want to mislead anyone for sure! and I did know about S and L syndrome but i suppose my Aunts docs didnt! hmm..

anyhow. again im just going to keep thinking and praying to see what I can do!