Spreading the word of PCOS

KimKatianna · 09-18-2005, 12:58 PM

Ok, I have thought about this several times and feel that there must be something that we can do so it can be positively received.

I saw a young overweight girl yesterday who had all of the characteristic signs, the way she carried her weight, facial hair, hair, etc. and my heart went out to her. I just wanted to run up and tell her to go be tested for PCOS. I would never do that because it would be awkward and I would be afraid of hurting the person. I have thought to do this with other people as well.

I feel so strongly about this because before I was diagnosed I was very fit, I was a dancer, and bicyclist when I started gaining drastic weight. I would cry all the time wondering what was wrong with me. I kept a food journal and would to go the the doctor and ask what is wrong? I stopped dancing because I couldn't bare to look at myself in the mirror. This also happened recently when I got a personal trainer, nutrionist etc. They all couldn't figure out why I wasn't loosing more then 2 lbs a month. I am now on Met and have no issues loosing at all at this time.

So back to the point of what I was really trying to say is I wish there was a way we could reach out to those cysters who might not know yet and would have a positive outcome. I know it would have made a huge impact on my life when I had no idea what was going on since most people aren't diagnosed until they are TTC.

Does anyone have any good ideas for this situation or positive stories?

jlbrown122 · 09-18-2005, 02:04 PM

I don't know what the answer is. There has to be some way to start a conversation and let a woman know there is help. I also was always fit, ate healthy, etc. Then I stopped taking BCP, got pregnant, had a miscarriage, and gained 70 pounds within 1 year even though I was still exercising and eating the same. I was so depressed and just wanted to give up. I was working out 5 days per week at Curves and kept continually gaining weight. The manager had me write down everything I was eating for 2 weeks. She said there was no reason at all that I shouldn't be losing weight because I was doing everything right. She suggested having my thyroid tested. I did and when it came back normal, the doctor suggested diet pills. I refused. I still get angry when I think of how the doctor should have recognized that all of my symptoms were also symptoms of PCOS. I would have loved it if someone had told me about PCOS. I was relieved when I was diagnosed a few months ago because I finally had an answer. I hate the thought that other women may be going through this and not being diagnosed. It's like some doctors assume if you are overweight that you just sit on the sofa all day eating candy. If more is done to educate everyone in general about PCOS, then maybe some women will be able to see that they have those symptoms and ask their doctors about it. I honestly believe that ALL doctors, not just an RE, should be better trained to recognize the signs of PCOS.

lovelyinkedlady · 09-18-2005, 02:09 PM

Starting a support group is a good idea.

I'm doing a Report on it in my chiro class on pcos.

*Shellie_Star* · 09-18-2005, 02:11 PM

Maybe you could write to some of your local or national magazines/papers asking them to run an article or something. I was thinking about doing that here. x

KimKatianna · 09-18-2005, 11:28 PM

Those are all great ideas, I will have to start thinking more. I did think a little bit today before I read these excellent ideas and thought that maybe I will put together a business card that has symptoms listed and then links of where to get more information or even as one poster suggested reference my/a support group ;o). I wonder how that would be received? It can be a sensitive subject, definitely needs more thought.

Dreaming Wolf · 09-19-2005, 10:10 AM

I also sometimes see women that I think have it and don't have the courage to go up to them. Even my cousin... I'm sure my aunt had it, she was obese (put on the weight suddenly late-ish in life) and died young from a heart attack. I've been meaning to talk to my cousin about getting tested for it, before the symptoms hit her, but it's hard to bring it up.

Still, if the situation was right and I felt really passionate about it, I guess it wouldn't be too rude to say to someone, "Excuse me, I hope you don't find this rude, but I was wondering if you have PCOS?" If they don't know what it is then you could tell them, and if you either started or belonged to a support group, you could use that as your excuse for bringing it up, or something like that. There's the chance that they'd hate you, but if they're a perfect stranger, who really cares? You couldn't possibly hurt their feelings on the same level as someone yelling out an insult would, and at best you could be saving their life. I'd say, just do it.

shouse · 09-19-2005, 11:24 AM

As a middle school and hi8gh school teacher with PCOS, I often see girls that I wonder about. Just a couple weeks ago I noticed a student with acanthosis nigricans on her neck. She's probably close to my weight (250 lbs.) and is only in 6th grade. I couldn't keep quite about this so I went to the school nurse. I started the conversation by saying, "This might not be anything and probably isn't any of my businees, but I noticed something about a student that I think maybe needs to be checked on."

As a 6th grader, she's got a lot of time when something could be done before this would blow up on her as it has so many of us. I started having problems when I was about an 8th grader...I would have LOVED for someone to know what was going on and to be looking out for me at that point. Instead, I wasn't diagnosed until I was 28.

I sometimes think of how much better my quality of life and self-esteem would have been if someone had noticed...

lizziebelle · 09-19-2005, 11:53 AM

I have often wondered the same thing. I have seen women who have all the noticeable signs also and I really wanted to go up to them and ask, but I was afraid to offend them. However, I wish someone would have come up to me before I knew what was going on and said something about it to me. But then again, who knows, I may have been horrified, thinking OH My Gosh- is it that noticeable!!!