I Spy: Poly Cystic Ovarian Syndrome

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I saw a Plus Size Princess on the 3 train yesterday. She carried her weight in her stomach/midsection, her skin was a little shiny and I could see the bumps under her chin where she’d shaved away her facial hair. I would be willing to bet money that she had Poly Cystic Ovarian Syndrome. Sadly, I couldn’t be so sure that she knew that she had it.

I have PCOS, and while knowing about it doesn’t solve my all of my problems, it does help me understand my body. I think those of you who have been diagnosed will agree that knowing what this issue is changes everything. With PCOS in the picture you dont feel like a total freak because you’re a girl who has to constantly shave random parts of her body. You start to learn what you can/can’t eat and why you have to work extra hard to lose weight.

The unfortunate thing is that many women live with PCOS for years before a doctor bothers to tell them what’s going on. These women are without the expert knowledge of information that comes from doctors being educated. (Even the most basic health science degree program, could prevent women from never being diagnosed with what hurts them).

I can remember being 17 (I was diagnosed in high school) and listening to my 28 year old cousin complain about having to get her face waxed. I took a deep breath and asked her a few personal questions: Do you have irregular periods? Do you feel like your skin is oil/acne prone? She answered “yes” to both. The irregular periods, facial hair and the fact that she was plus size made me pretty confident that she had PCOS. I told her what it was and suggested that she talk to her doctor about it. A week later she called me to say that her doctor confirmed what I said.

I’ve heard stories of women who find out they have PCOS because of fertility issues or women who have to see three or more doctors before someone can explain why that never have their period and cant lose weight. Of course, once PCOS is identified there’s so much that can be done, (the cousin who I diagnosed struggled with infertility, but she gave birth to her first child last year after getting herself to a healthy weight.)

The problem is that women can’t get healthy if they dont know what’s going on in their bodies. Education and knowledge is so important, which is why I wish I could stop every girl I see with traits of PCOS and make sure they know what they might be dealing with. Its just frustrating that as someone living with PCOS, I can spot it a mile away, but so many doctors can’t do the same.

Have any of you had to educate someone about PCOS?

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  • http://www.blogger.com/profile/17320984660362547600 Amanda

    I was educated about PCOS and my doctor speculated that I have it (which I am sure I do), but would not diagnose me because since I was not trying to get pregnant, there is no reason to bother. Gotta love the healthcare system in Florida. I am still doing research and not sure what route to go to handle it.

  • http://www.blogger.com/profile/05856569796210470854 Megs

    I have a horror story about being diagnosed. I was misdiagnosed when I was a teenager and this caused even more problems. I was put on a steroid when I was 15 and kept on that steroid for 6 years. This caused me to feel even more like a freak because the steroid worked havoc on my body. It was worst then just all the other things that come with PCOS and on top of it I developed another medical problem.

    I was finally diagnosed with PCOS when I was a sophmore in college. It was like someone turned a light on for me. It was the most amazing thing ever. I felt so much better. I felt like I could actually do something. I started reading all I could and I decided not to take medicine. It took me another 5 years to get the affect of the steroids out of my body and down to a "normal" weight. I had years of body image issues to get over and it still makes it hard for me to date. It is frustrating to me how little is known about PCOS. It is also not just a fat person syndrome and I have meet skinny woman who have struggled with it. I am convinced my mom has it but her doctors say she has a thyroid problem. She was a normal weight when she got pregnant with my sister and I. I think my aunt who struggled to get pregnant had it as well but again she was thin. I tend to read the research out of the UK on PCOS. They are much more willing to look at alternative ways of treating it. I wish that it was easier to become more active and spread the word about it. I am constantly educating doctors and people, so that this doesn't happen to other people.

    Thanks for writing this post. It is always nice to hear of other people with it and their stories.

  • http://www.blogger.com/profile/05856569796210470854 Megs

    Amanda there are great books out there and here is a wonderful website http://www.ovarian-cysts-pcos.com/pcos-blog.html

    The Ultimate PCOS Handbook is one of my favorites.

  • http://www.blogger.com/profile/08328706448357274645 Fat Girl vs. World

    I was tested for PCOS — but nope.
    I'm just fat with irregular periods (I have hemorraghic cysts! fun!).

  • http://www.blogger.com/profile/17320984660362547600 Amanda

    Thanks Megs. I have been doing research. Not sure how long I have had it, but I think for a while. My acne is horrible and weight has always been an issue. I will check those out. Thanks!

  • http://www.blogger.com/profile/05856569796210470854 Megs

    It will be nice once you figure it all out. Try and find a new doctor. You shouldn't have to wait to be treated. Also, this is easier said then done, losing weight will change your life. I have not had an irregular period since I lost my first 20 pounds 2 years ago. Feel free to contact me megshughes at gmail.com I'm more then happy to answer questions.

  • http://www.blogger.com/profile/15325463416827122179 Jolene

    hi there! found you through Quarter for her Thoughts/IntrigueMe and can relate to this in that a close friend of mine has severe PCOS and is having major infertility issues…so I feel for anyone that does have this, though it does answer a lot of questions about health related issues. Good luck, hope things improve with medicine!

  • http://www.blogger.com/profile/10456228024529738574 ~Sarafina~

    Yep. I have a friend at work that has all of the symptoms, except the overweight part (she's a runner). I lent her my books, she saw my endocrinologist and was diagnosed.

  • http://www.blogger.com/profile/00191250739548524094 steph gas

    like amanda, i was also educated about pcos from a friend and am convinced that i have it – i have all the symptoms. but my doctors say i do not, and cannot give me an adequate answer for my ridiculously irregular periods, extreme problems losing weight – and most of the weight is in my midsection, or the acne that i have developed as an adult. i too am in florida, and have been to numerous doctors in my area with no luck.

    so they decided to try and push it all of on 'pre-diabetes' and put me on metformin, which was a complete nightmare. so now, i just deal with the pain and the crazy periods and strange plucking that has to be done. hopefully i'll be able to find a competent doctor who can at least tell me *what* is going on.

  • http://www.blogger.com/profile/05856569796210470854 Megs

    Steph it gets better go and check out the book I mentioned and PCOS Diet book is pretty good too. It took my five years after being diagnosed to lose any weight and keep it off. The key really is diet and exercise. You don't need the medication for this. All the medicine does is change some of the symptoms. Don't get me wrong there is some great medicine out there that will help you get control of this situation, but in the long run learning how to care for your body does wonders. Good luck!

    Sorry for all my comments I just hate hearing about doctors that don't understand what it is like. PCOS is almost impossible to really diagnose since not many doctors understand it and the Cystic ovary part confuses them. PCOS dose not mean you have cyst on your ovaries. They are actually considering changing the name. It is a hormonal imbalance and a symptom of this may be very small chains of pearl like cyst on your ovaries that are hard to see. The fact that the doctors didn't see cyst on my ovaries when I was a teenager is what lead me to years of living with a syndrome I didn't have.

  • heather

    I was (finally!) diagnosed with PCOS about 10 years ago thanks to a vigilant GP and I was put on Metformin – which I took for 3 months until my bag (and prescription) got stolen. I never renewed my prescription after speaking with my acupuncturist who said that taking a drug every single day of your life did not sound like a solution to him.

    What I do know is the PCOS is hereditary, so it's highly likely that your Mother or/and sisters have it, too. Also, it's pretty common and doctors don't know whether it's weight gain that sets it off, or it's the PCOS the kicks off the weight gain. Personally, I have always been plump and to get down to a reasonable size (UK 12) takes a LOT of work – no carbohydrates and super amount of exercise. I cycle every single day and I eat in moderation and healthy and I have plateaued at a typical UK size 16.

    Ah, the blessed 'apple shape', I hate you. I can't tell you what bane on my existence this unshakable weight gain has been. All the things I haven't done because of feelings of self hatred…

  • http://www.blogger.com/profile/17851112667641034359 Mavy

    This is an emotional topic for me.

    I was training 5 days a week as a swimmer for over 8 years but never understood why I was always the heavy one in the team too until I was 18 when one of my irregular period came…..this time full blown for 2 weeks. It was horrible. It was only then the doctor diagnosed me and told me fertility is like zip.

    Every doctor says you have to lose weight in order to overcome PCOS but no one ever mentioned weight itself is hard to shift and how it was all connected… I found THAT out another 8 years later and felt like a fool. Everything suddenly made so much sense and cried my eyes out for days after coming to terms that PCOS is what making it so damn hard to lose weight. I was so conscious about my size since childhood and often felt like an outsider because I thought I was the only one who had it.. all my friends had their period and it sucks when people just assume because I eat alot. =/

    Since then, I have made peace with myself and have been back exercising again with a different attitude. Yes, it is still tough as hell to lose the bulge because you have work out triple hard but least I know I am taking care of myself. I am loving myself more now. A lot more. =)

    Thanks for posting this topic. I didn't expect to share my PCOS story online since it's a very personal journey for me but it really hit home there. =)

    Thank you to the other ladies too who shared their stories too. If I could you girls now, I would! (((hug)))

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  • http://www.blogger.com/profile/15479980691366086356 Punky

    I was educated about PCOS because my good friend was mis diagnosed with it. She had maybe one of the symptoms and they gave her a strict diet and medicine which really messed with her body. It was a crazy situation.

    But we did learn a lot!

  • http://www.blogger.com/profile/08072366709639932651 IntrigueMe

    I've never heard of PCOS before but my doctor is currently booking me an appointment with a gynecologist to discuss my extremely heavy periods (sounds like opposite for you? I'll have to google it) and my insane hormone fluctuations. I won't lie, I'm not looking forward to it!

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