Polycystic Ovarian Syndrome (PCOS) Community
3.58k Members
Avatar universal

PCOS foundation?

Hi everyone!  

I've been thinking about it a lot, and the more I look at the stats and think about how many people have PCOS and don't even know it (approx. 75%!) and I wonder if there's a foundation the works with women with PCOS.  I've done some internet searching and I've never found anything official.  I think it would be fantastic though if we could find some way to raise awareness and to get funding for PCOS research, because it does have a ton of complications as we all very well know.  

I'm 19 years old, I've had PCOS since I was 15 (at the official diagnosis, but I'm sure it started way before that) and my treatment is working for me.  I want to help out everyone who is having trouble or doesn't even know what's going on with their body, because it can be hard and it is REALLY frustrating.  I have three younger sisters, and one of them definitely doesn't have it, but the other two are too young for us to know yet.  I can be there to help her, but who is going to help everyone else looking for guidance, going through doctors like crazy, and feeling like their lives are out of control.  We have this site, but not everyone knows about it.  Maybe we can do something about it to let other women know that someone out there knows what they're going through.  I've only been a member for a few days, but already I've realized how much help this site can be.  Thanks for everything.  
1 Responses
Avatar universal
Unfortunately PCOS is hard to diagnosis. If the right hormones are not checked, then a doctor will never know if you have PCOS...this is why so many women do not know what is going on with their bodies. I was a lucky one. I found the right doctor, he tested me for the right hormones and bam, there it was. Because PCOS, has so many different symptoms (from being overweight, or thin, too having cysts and not having cysts, too no ovulation with normal periods, or too no ovulation and irregular periods), it takes time to figure it out. I went for a dozen ultrasounds (internal and external), both ovaries and uterus are normal, no cysts and not endo. I only have PCOS due to the fact my hormone levels were out of balance and irregular bleeding. My treatment is working for me also. I have (with the help of my great GYN) lost 50+lbs and been off my birth control for now 4 months and have had 3 normal pill free periods (currently waiting on the next cycle). I take Metformin 500mg 2x, but am looking to increase that dose in 2010 with doctor approval.

This site is great for those who think they might have PCOS, or in fact do have PCOS. We all need to stick together, because even though we are all struggling in our own ways (either with weight loss or trying for a baby) we all in the end still have PCOS. And unfortunately, PCOS just doesn't go away. Even though your symptoms may get better, or be at the stage or almost gone it will always be in your body. Which is why we need to listen to doctors, and have the right doctor listen to us.

Never ever let your doctor brush you off. If you suspect something might be wrong with your body, make them listen or find a new doctor. It took me 3 doctors, a trip to the ER and serveal (no reason) blood work, and ultrasounds to figure out my "unxplained bleeding". I thank god everyday for my doctor, because he listened to me. And if it weren't for him, I'd probably still be bleeding too much.
Have an Answer?
Top Women's Health Answerers
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
From skin changes to weight loss to unusual bleeding, here are 15 cancer warning signs that women tend to ignore.
Here’s what you need to know about the transition into menopause – and life after the change takes place.
It’s more than just the “baby blues.“ Learn to recognize the signs of postpartum depression – and how to treat it.
Forget the fountain of youth – try flossing instead! Here are 11 surprising ways to live longer.
From STD tests to mammograms, find out which screening tests you need - and when to get them.
Find out if PRP therapy right for you.