Invited to Speak about PCOS- what do I say?

SandV · 06-25-2008, 01:25 PM

I am looking for everyone's help as much as possible. I have been on an endeavor over the last few weeks to get information out about PCOS to others on the island. Today, I received a call from the St Lucia Diabetic and Hypertension Association asking me if I would come and speak to others tomorrow at their Open House Day. There will be other groups there to speak about Lupus, cancers, healthy eating, etc.

I am feeling overwhelmed. I want to do this (and would have to leave work to do it). I am not sure what to print out, what to bring with me. Of course, this would be out of my own pocket as well.

Suggestions? Anyone know one good article/literature on one page?

Thanks in advance to all!

journey18 · 06-25-2008, 02:10 PM

Perhaps you could take accounts from people on here who have pcos and what it's like to live with it?
You could probably aswell talk about the symptoms, what it means, why it's important to raise awareness on it, how to raise awareness, how to help eachother.
You could use quotes from various people and relate it to PCOS somehow?

HTH!

I'm not sure if I know of any decent bits of literature on it, I tend to pick things up as I go along.

Best of luck though!!! xxxxxxxxxxxxx *hugs!*

Tori.O · 06-25-2008, 03:26 PM

Well, first of all congratulations! That's awesome that you're able to do so, and that you'd like to do it!

I'd suggest some general information, an overview of the symptoms, and what some people go through, and how it impacts people, but also stress that it is manageable and that people can still have an enjoyable life with PCOS. You could always have just a collection of links that people could go to for information. If you want to hand out a handbill or something. maybe make it so two fit on a sheet of paper, and ask if you can get photocopies done through the agency? You could even tell them you're bringing in your own paper and they might be more willing (Maybe a pretty pale-turqoise or green paper?). Paper isn't too expensive, and if they're willing to let you borrow the photocopier and some scissors, that definately helps!

Just stay positive, keep it simple, and don't be afraid to tell people that learning about disorders, and changing your life, is a process, and that it can take time, and sometimes, we don't know everything! I find that people are usually more receptive if you don't go up there and 'pretend' to be an expert...Just know what you know, present that, and encourage people to see it as something they can connect with. Even if THEY don't have PCOS, I'm sure someone they know, or someone their friend's know might, and that little bit of compassion, created from even just a bit of friendly knowledge helps!

Good luck, best of wishes, I'm sure you'll do fine! Just be yourself, talk slowly, and have hope.

SandV · 06-26-2008, 01:54 PM

Thanks to both of you for your responses. After giving it some serious thought, I opted to extend an offer to speak at another time. After learning more about the Open Day, it was booths set up for different organizations. Since they had only asked me yesterday, and I would be footing my own bill, I did not feel I would have the time or the resources to prepare adequately (Paper costs 2x as much down here as it does in the US). Also, I did have some previous responsibilities for work that I would feel bad leaving behind.
I am kind of disappointed with myself for backing out. I have been pushing and pushing for more awareness.
Hopefully, they will take me up on my offer.

toomuchcoffeelady · 06-26-2008, 02:25 PM

IMO, something else that's important is what tests people need to have PCOS diagnosed (and also to rule out Cushing's, hypothyroid, etc). Because me personally, and for other cysters I know IRL, one of the biggest hurdles was convincing the doctor, "No, I'm not this vain person who's stressing about acne and hair loss and just needs to put the fork down." I'm a thin cyster myself, and it took me 3 years and 3 pregnancy losses to find a doc willing to run a hormone board on me - ridic! I think the biggest hurdles to getting more research/a cure for PCOS is the general contempt people - even doctors - have for obese/unattractive people.

SandV · 06-26-2008, 03:37 PM

Quote:

Originally Posted by toomuchcoffeelady

IMO, something else that's important is what tests people need to have PCOS diagnosed (and also to rule out Cushing's, hypothyroid, etc). Because me personally, and for other cysters I know IRL, one of the biggest hurdles was convincing the doctor, "No, I'm not this vain person who's stressing about acne and hair loss and just needs to put the fork down." I'm a thin cyster myself, and it took me 3 years and 3 pregnancy losses to find a doc willing to run a hormone board on me - ridic! I think the biggest hurdles to getting more research/a cure for PCOS is the general contempt people - even doctors - have for obese/unattractive people.

The problem with the islands is for the most part, if you go to the dr and you are not trying to conceive they just want to put you on birth control. They do not check for anything else. Also, women do not understand the consequences of not getting AF each month.
I appreciate your feed back so much. I will be sure in my next chance to add that info.

lovelyinkedlady · 06-26-2008, 04:51 PM

I know there is a panflet (sorry bad spelling) somewhere on the boards.L Like what you would give to someone who wants to know more.

I would also have a list of reputible websites for information about PCOS, it's effects, and test that should be done. Also a list of drs who understand pcos and are there for more then just the one who wants to get pregnant but to help treat the symptomes of pcos.

if i can think of anything else i'll drop a line to you. Congrats on getting asked that is wonderful!

toomuchcoffeelady · 06-26-2008, 06:14 PM

Quote:

Originally Posted by SandV

The problem with the islands is for the most part, if you go to the dr and you are not trying to conceive they just want to put you on birth control.

If I can be honest with you? The only way I finally got a doc to test me for PCOS and such was I claimed we had been TTC for two years without success. Otherwise? I was hearing terms like "imagination" and "wasteful medicine" when seeking help for my acne, hair loss, and moon face. And, I live in a major US city. People's worlds are really just that small.

toomuchcoffeelady · 06-26-2008, 06:15 PM

or, have you thought of setting up a website (geared specifically for Carribbean people, ie including local RE's, naturopaths, etc) with this info?

SandV · 06-27-2008, 09:50 AM

Quote:

Originally Posted by toomuchcoffeelady

or, have you thought of setting up a website (geared specifically for Carribbean people, ie including local RE's, naturopaths, etc) with this info?

That is a good idea. I have a friend that is a webdesigner too. I am sure he would help me with it. I will have to speak with him about it. The next thing is getting the word out to those who don't have internet - or don't know how to use it.