JULIEMINER

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PCOS: Coming out of the closet

Monday, March 07, 2011

About ten years ago, I was diagnosed with PCOS. I freaked out, lost 35 pounds and all my symptoms vanished. And I told almost no one why I did it. Three kids later, my weight has crept back up. I recently started reading about PCOS again, surprised at how much more literature and research there is now than there was when I was first diagnosed.

But it's so damn embarrassing. When you google it - it's all like "extra testosterone" and "weird sprouting hairs" and "can't get pregnant" and "obese" and "hormonally unbalanced" and "practically turning into a dude". And people will read that I have PCOS and then they'll google it and then they'll judge me. And maybe snicker at me a little. And its sort of like having all the things you're most ashamed of out for all to see. So I didn't say anything.

But that's wussy and chicken schmidt and that is NOT me.

So here I go. I have PCOS and its not my fault that my stupid hormones are all messed up. And its the reason why I gained weight in the first place and why it's incredibly hard for me to lose weight now. And you know what, it makes me feel oddly BETTER to know that there's a medical reason why those things happened.

I take total responsibility for letting my weight get out of control but I am reassured that the overwhelming difficulty and disappointment that I face in taking that control back is not all my fault. It is hard and it will always be so - because of stinking PCOS and because IT IS JUST PLAIN HARD . But I also know that I have kicked its arse once before.

So after taking a couple of weeks (OK, fine - two months) to revert back to being a lazy slug, I'm back on track. Except this time, when I kick PCOS in the taco - I want to use science. I need to learn everything I can about the condition itself and insulin resistance and the concepts of glycemic index and glycemic load. And I need help with that. So any advice or resources would be greatly appreciated.

About 8 months ago, I started working on my weight. But it's been really up and down. If I'm going to figure this out for the long term, I need to wrestle PCOS to the ground and then stake it in the heart. Like a vampire. I've always wanted to be a vampire slayer. The key is knowing how to kill them. I need to learn how to kill PCOS.

And for anyone who may read this who also has PCOS (although I'm pretty sure no one will ever read this - so much for my grand public statement) - how lucky are we? We have tons of new research on a largely reversible health condition. We have each other. And just a few years ago, millions of women dealt with all the same crap and were told they were crazy and there was nothing wrong with them.

That's all for now. I'll report back when I've developed my first strategic steps to squaring up on PCOS.

xo, Julie
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Member Comments About This Blog Post
  • MSHEL7
    Thanks for sharing, I have PCOS, know how you were feeling. So cool to search the blogs and actually see something on the very thing you are experiencing.
    2988 days ago
  • no profile photo CD12662993
    I agree with Dana!!!
    When I saw that almost a year went by and I had no period, while some family members said I was lucky I knew that was not normal... It took a while (years) I'm now 28 for a doctor that knew what PCOS was and the symptoms I was going thru to finally let me know I wasn't a freak. I had to get on clomid and some other meds to conceive my 2 daughter. And 3 years later my husband and i want to have our little boy but guess what I have PCOS and its going to be kind of hard... I have research so much about PCOS and trying remedies like Maca root, supplements, vitamins etc and I too want to kick PCOS in the tacos, lol...
    I'm trying to keep an exercise regimen, better healthy eating. But I have always been a beleiver that while we have health we can make a difference and we are!! PCOS awareness is out there more than ever and more and more women are realizing they are not alone and there are so many things that we can do to beat this!!! emoticon
    3222 days ago
  • HOLLWALL36
    Wow! I have never met anyone else who felt exactly the way I feel. You are such an inspiration. Please share the information you find. Good Luck!
    3663 days ago
  • UMIOF3BOYS
    I too have PCOS! I am definitely going to check out insulin resistance diet book that PirateMel mentioned. If I find any good resources, I will definitely post on here. PCOS is a nasty little hussy and needs to put in her place!
    3694 days ago
  • JRSEYGIRL
    Julie (tho personally I like Julydia it reminds me of summer my favorite time of year, but I digress but I tend to do that a lot),
    I have a frend with severe PCOS and she has other health issues too but has found that limiting all food that she eats to organic, free of hormones and antibiotic etc, that she can keep many of the horrible symptoms of PCOS under control. I know in the DC area where we live there are Whole Foods and Trader Joe's and even now regular grocery stores and believe it or not even Costco that carries organic stuff. You may want to try incorporate that into the insulin resistant diet. Though with the difference in prices Captn Coupon may object, but just tell him you and your health is worth it.
    there are many people in your shoes and I also agree with Dana that checking out and joining one of the PCOS teams might add a wealth of information and support for you, besides the wonderful gals here on RFML.
    On another note, Thank You, Thank You, Thank You for starting this team. I have been needing to loose weight and knowing it for the last ummmmm 5 years or so but have never found a diet, exercise, support group that I wanted to join, but I knew I would love to be a part of this team and I do not regret joining. You, and all the gals on this team ROCK!!!

    3694 days ago
  • RUNRUNMAMA
    Hi Julie -

    You are awesome for sharing your PCOS story! I too have PCOS and so enjoy explaining to people my "man hormones" and other exciting details about my reproductive system/lady parts. Maybe that's why I keep it my myself most of the time, it's just so personal!

    Even though our hormones have dealt us a crappy hand, we will, as you said, kick it in the taco:) You already have, take a look at your 3 beautiful children. Now we will just deal the death blow and lose the weight too! I've found that more than anything, I need to be careful about my carb levels. If I keep the carbs in the recommended range, the weight comes off more easily. After observing the size of my ass, you can decide if you want to take that advice or not!!

    Go girl! You can do it!
    3695 days ago
  • no profile photo CD9656784
    Hi Julie! I am a faithful RFML reader - and on my own complicated health journey. Although I do not have PCOS - I have some experience with my body screwing itself up. Due to massive stress, lasting nearly 4 years (some highlights: house in foreclosure 3 times - near divorce - son diagnosed with Aspergers...and so much more)

    My body decided that if I insisted on being calm and not going to the psych ward where nice people in white coats give you drugs... then it would turn on itself. I developed asthma at 45, psoriasis, Low thyroid, type 2 diabetes gained 50 lbs and could not stay awake. No really - I could not stay awake!

    When the dust settled, and we did not lose the house or the marriage - I took a breath, and started to rehab. I went to a sleep specialist, and was diagnosed with Hypersomnia - the opposite of insomnia. Now it may sound nice to sleep 16 hours a day - not really. It's like having mom passed out without the T-box. I now take Adderall to stay awake, and count it a win if I only need one nap a day. Good thing my kids are teens and not 2yr olds.... but still.

    I AM SURE all of this is from the stress (such a small word for such big problems)
    So - finding time just for you - just you is key. Put Mini in all day child care one or two days a week, then DO NOT volunteer - just do for you.
    And yes - I do read the blog every day.

    So hang in there - my moto for 2010 was fall down 99 times - get up 100.
    For 2011: Remember this is not a sprint, but a marathon.


    3696 days ago

    Comment edited on: 3/11/2011 1:48:04 AM
  • PIRATEGIRLMEL
    My dear Julydia (hehehe, I like that. Julydia. Lyjulie? Lydulie? No? Sorry. Anyway.....ahem). I'm totally with you on this one. For years, my mom and I have both suspected that I have PCOS. I have EVERY symptom but have never been able to get a doctor to take me seriously because they all said "You have a kid, you can't have PCOS. Women with PCOS are infertile. Plus, your periods are normal." Of course, I now know they're idiots. Women with PCOS are NOT infertile. Sometimes they have fertility issues, yes. But, just like any other syndrome/disorder, not EVERY person has EVERY symptom. That doesn't matter now, though....I am now one of those with EVERY symptom. My periods are all outta whack now AND we've been trying for baby #2 for almost 3 years now with no luck. So, even though no doctor will take me seriously (and there's no "official" way to test for it....you just have to display enough symptoms for them to say sure, you have it), I *know* I have it. And I've done a ton of research and started trying to eat Low GI. I highly recommend reading "The Insulin Resistance Diet: How to turn off your body's fat making machine" By Cheryle Hart and Mary Kay Grossman. It helped explain a LOT for me :) http://www.amazon.com/Insulin-Resis
    tance-Diet--Revised-Updated-Fat
    -Making-Machine/dp/0071499849/r
    ef=sr_1_1?ie=UTF8&qid=129956984
    2&sr=8-1

    Also, come do the 100 Days to Summer Challenge with us on the RFM team. We're pretty much awesome. :)
    3699 days ago
  • PLEEBLES
    Ha ha I guess you were wrong about no one ever reading your blog, eh? You should know better than that. Well we did miss you on the team... glad you are back... And yup you started a really good thing here, you have quite a few of us that are loyally checking in with RFML daily (or hourly!)
    3699 days ago
  • THEMIGHTYLILLIE
    Yea, PCOS is really common! A LOT of women here on Spark have it and live with it every day. Dana is right-- the PCOS teams here on Spark have a TON info and are really supportive.

    Dropping weight will show you immediate results in how you feel--- I am a perfect example of that. My hormones were MESSED UP after having my son--- think a literal year of non-stop bleeding--- and after the first 15 pounds were lost, my periods started on their own and stopped on their own. Things are different for my body at 200 than at 215..... VERY different. And here at 190, things are even better.

    Stay strong and keep your mind on the first 15 pounds.
    3699 days ago
  • no profile photo CD5023796
    yep.
    type PCOS into the search box on the teams page and
    26 teams will pop up. Some are for people wanting community for the infertility aspect, but it looks like most are there for the weight-loss issue.

    You could make good on that wager (if you had made it) with one million dollars' worth of Vodka-injected Capri Suns. (liquor-lover's t-box)
    3699 days ago
  • no profile photo CD5023796
    I would bet a million dollars that there is a sparkteam for women with PCOS. There is a team for everything: locations, fetishes, faith denominations, witches, Trekkies, disorders, age groups, Shiny Happies, Dark & Twisties, you name it.

    I'm so glad you are back to reboot yourself! I really hope you know that even if you haven't been super active with our team since it's inception, RFML and the announcement of a Sparkteam budding off of it are THE reason I came back to SparkPeople. I owe you a huge debt of gratitude for the part you have played in creating our little family of ranty mommy sisters. It keeps me going like nothing else ever has.
    3699 days ago
  • YARAC211
    Hooray for posting this Julie (or should I say, Buffy). PCOS is sooooo common but so not talked about. I know so many people who have struggled with their weight and infertility because of that disease. Grab your stake and your crucifix and slay that b!tch. We'll be your scoobies and stand by you the whole time.

    Too many Buffy references? Sorry, I get excited.
    3699 days ago
  • no profile photo CD8923508
    Years back while I was hanging out on fertility and pregnancy boards there was many women on them who had PCOS. It's not like this thing that only 2 people in the country have, many have this issue. I'm proud of you for coming out of the closet and exposing it to the daylight because now that it's out there I'm sure others with it can relate.

    You have done it before and you will do it again. I like your vampire slayer analogy but mostly because that sounds all badass and you seem to be so it fits.

    Welcome back!
    3699 days ago
  • YCAMOMMY
    PS ... if you happened to pass by Kate's shoe closet on the way out of yours, can you grab me a pair of Jimmy Choo's? solid. xoxo
    3699 days ago
  • YCAMOMMY
    Julie - before I say anything else, know that I am sending you a huge big stinking hug and squishing you until your eyeballs pop out of your skull!! But, because I'm nice, I'll put them back in for you - even wash them off first, cuz this floor is a little dusty.

    We all have crappy obstacles that stand between us and weight loss. Time management, bad nutrition habits, lack of energy, depression, exhaustion, too many activities, no encouragement or support .... and then, for the fondant on the cake, let's add medical issues!

    I'm so incredibly glad that you shared your struggle with us - I'm sure there are several women that are going to be helped! I have confidence that your determination will set you on the right path and that you will destroy all of your goals! You are gorgeous and will totally win!!! YAY YOU!!!!
    3699 days ago
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