Polycystic Ovarian Syndrome & Weight Loss

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Hello Cece,

I have been reading your blog for about 6 months and very much enjoy your writing and perspective … but I am always bothered when you bring up the topic of PCOS for a number of reasons.  Mostly because I have severe PCOS.  I am on metformin (insulin support), spironolactone (testosterone inhibitor), and birth control.  One of my ovaries was completely destroyed by scar tissue before I was even diagnosed.  If my condition gets any worse, my endocrinologist has suggested that I go on a special-mix hormone injection on a bi-weekly basis as I’m pretty much maxed out on the pills.  So please do not think that this email is coming from a lack of understanding.  Trust me.  I understand.

But PCOS does not make you over-weight.  In fact, being over-weight can actually TRIGGER the symptoms of PCOS, i.e. many people’s symptoms lessen or completely disappear if they lose weight.  Now I am not going to claim that losing weight isn’t more difficult when you have PCOS – most doctors now (finally) agree that it is.  However, it is not impossible – and I think that it’s important that the public voices of the PCOS community are quite clear on that point.  Many of your readers could be one of the lucky ones that can get real symptom relief upon losing weight.

Before I realized I had PCOS, I was a sugar addict (which obviously is the key driver for gaining weight with PCOS).  Upon diagnosis, I was 175 pounds, i.e. over the healthy BMI zone – I’m 5’6 btw.  I then started taking my medication, working out, closely monitoring my calorie intake, and working with my endocrinologist to set up a PCOS-friendly diet (i.e. no sugar, no white starch).  I lost 40 pounds and am now back into a healthy range on the BMI scale though by no means rail thin.  So I STILL have severe PCOS … but I’m no longer overweight.

I am not writing this to judge those women who want to lose weight and have a hard time doing so.  I understand what it feels like to not be happy with your body and have to struggle twice as hard as others for every pound lost.  But a message of hopelessness to PCOS women is not a responsible one and I encourage you to confirm my email with a doctor and adjust the messaging on your blog (and monitor commenters accordingly, who are sometimes misinformed on PCOS to an extreme level).  You owe it to your very loyal readers to share the truth about their situation.

I don’t mind if you post this letter, though I’m guessing that you won’t.

Take care,
Jess

Hey Jess,

I’m surprised that you think I wouldn’t post your letter, I think you make an interesting point.

Every persons weight/weight loss story is different and every PCOS story is different. I love that you’re bringing up another side of PCOS. I also appreciate that you’re willing to share your personal story.

My understanding of the connection between PCOS & Weigh Gain is that one can trigger the other, but there are mixed opinions about which does what. Its like the old adage “which came first, the chicken or the egg?” but that’s just scratching the surface of what triggers PCOS. I’ve met people with PCOS who are super skinny, so there’s not a 100% proven cause. But at the end of the day I am not a doctor, so I’m not qualified to debate PCOS. I can only talk about my history and experiences.

When I share my stories on TBGB, I never have the desire to send a “message of hopelessness” as you say. I’m kind of sad that you’ve interpreted my writing that way because I live my life just the opposite. The spirit of this blog is that being over weight is not the end of the world. For me, having PCOS is not the end of the world either.

Every Wednesday I talk about my weight loss and work outs… and when I gain weight I never blame PCOS. Weight loss with PCOS is possible, sometimes it just takes a little more dedication… its all about choices.

Hopefully your letter will shine some light on another experience and influence different thoughts, but I don’t plan on monitoring my readers comments. I like when people to speak their minds (as you did in your letter) and I also think its important for my fellow PSP’s to feel comfortable on TheBigGirlBlog… this is a safe space.

Anyway, congrats on your weight loss 40 pounds is a huge accomplishment!

-CeCe

CeCe@thebiggirlblog.com

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  • ShortNFluffi

    CeCe– I love your blog, and never once have I interpreted any of your postings to have a message of hopelessness. In fact, on days I often feel down about myself or my weight I often turn to your blog for inspiration and joy.

    I am, however, in disagreement with Jess. I was not a sugar addict when I was diagnosed with PCOS, and in fact my doctor thinks that puberty is what exasperated my PCOS symptoms. He’s a gyno with a specialty in endocrinology and infertility, just for the record. I was diagnosed in 1994 at the age of 18 after my dermatologist realized my irregular periods, severe cystic acne, and facial hair growth were classic symptoms of PCOS. My pediatrician (remember, I was just 18 when I was diagnosed) had chalked up my weight gain to a thyroid condition but when the tests showed I didn’t have a thyroid condition, she just chalked it up to overeating and laziness.
    So there I was at the age of 18 trying my best to lose weight. In the early 1990s, the magical weight lose cure was low fat, low calories. So I began eating chop suey, Spaghetti-Os, and Dinty Moore stew in my dorm’s kitchenette while all of my friends were eating in the cafeteria. When I did venture into the cafeteria, I would eat a huge salad with my spaghetti. Do you see where I’m going with this?
    For six years, I went through a vicious cycle of eating low fat, low calorie food, working out, and gaining weight. Of having to defend myself to the doctors and Weight Watchers leaders who said I was obviously lying about my food consumption and workouts because I kept gaining weight.
    It wasn’t until 2004 when my mom spotted an article in Redbook or Good Housekeeping about another woman who had suffered from PCOS and the steps she took to gain weight that I realized: my low fat, low calorie diet was PACKED with carbs.
    So Jess, be thankful that your were diagnosed with PCOS in a decade where medical research and nutritionists have come together to figure out how best to treat your symptoms. And congratulations on your weight loss. Let’s all hope that the next decade brings us closer to treating the other symptoms of PCOS such as infertility and abnormal hair growth.

  • http://thetaleofgoingnatural.blogspot.com Leslie @ The Tale of Going Natural

    I don’t have hardly any of the symptoms of PCOS. I am overweight, I have fairly regular periods. No excess hair, no cystic acne. I DO however have incredibly painful periods. I can’t move at all the first day of my period, and spend it usually huddled up in a ball crying. I go the va-jay-jay dr the first of the year. I am scared.

  • http://eclecticthriftychic.blogspot.com Pam

    I think that PCOS and weight gain/loss is an individuatized thing. I started when I was 11 years old.. I was 5’10″ and 165 pounds.. Within a year I was 5’10 and 300 pounds. I didnt eat any more.. I was still very active.. But the weight just pouured itself onto my body..

    Ive been able to lose at most 50 pounds, but it always plateaus and I gain some back. I am a VERY active person, I eat right, and still I am now at 300 pounds. My PCOS has always been VERY advanced..

    I just think that other factors in the body affect the PCOS, so each person is different, and it’s not fair to say that it doesn’t cause weight gain in general. I think it’s a very personalized thing.

    Pam

  • http://www.strawberryfreckles.com Jill

    I don’t have any words about PCOS since I don’t have any experience with it personally….but I just wanted to say that (from what I’ve read so far) I think your blog is a wonderful “safe place” to express feelings and thoughts. I’m a new follower, and I’m glad I found you. And this post was very eye opening for me.

  • http://girlslashwoman.wordpress.com G/W

    I understand where the author of that letter is coming from and it is true that at times PCOS can be caused by weight gain but it can be the opposite of that as well.
    I’ve been overweight all my life and experienced normal periods and no symptoms of PCOS. Fast forward to the last year of high school where I dropped a ton of weight. My periods disappeared and my doctor chalked it up to the large amount of weight loss. Then after a 6 month absence, he had me tested and told me I had PCOS. My weight ballooned after that (of course it did, the way I lost the weight was not sustainable anyway and the PCOS didn’t help). Last year, I dropped 50 lbs and now I’m in a normal BMI range. PCOS is still going strong.
    So while I realize that losing weight can help some people, it hasn’t helped me with the PCOS. It has definitely been an obstacle and I sympathize with women who are trying to lose weight with it. Like losing weight isn’t hard enough anyway.

  • O

    I’ve replied before with my PCOS story.

    I think it’s clear that everyone’s PCOS story, symptoms, goals etc. will be different. Not to mention,our doctor’s all have different diagnosis and treatments. There have been relatively few studies on PCOS and it’s long term health effects, and many of the doctors I have talked to will admit that only recently have more efforts been going into studying it. I appreciate the letter’s author bringing it up as a great discussion, but I hope she realizes that this isn’t one size fits all kind of topic.

    We’re all precious snowflakes.

  • S

    I first read this letter the day it was posted and I had an immediate, visceral reaction that it was a wolf in sheep’s clothing. The author is hiding behind a veil of “No judgment here!” and, in fact, that is exactly what is happening. There is no “medical consensus” on PCOS, its causes, and its long term health effects. And while I appreciate that sometimes being overweight can cause it, sometimes it causes being overweight, and sometimes there is no correlation to weight at all. I am grateful that the letter writer had the courage to share her story but I wish she could have done it from a place of non-judgment. It would have been much more powerful.

    As everyone has noted, everyone’s PCOS story is different. I was diagnosed when I was 13, and I have never been a sugar (or anything) addict as I was raised (and still am) strictly vegan. I’ve never had an oreo or fast food. I am a dancer and I’ve played soccer, both activities I have enjoyed since I was old enough to walk. I weigh 300 lbs, and I have been to countless doctors over the years and find the level of judgment in the medical community astounding. It seems sometimes like they just can’t believe that my lifestyle is true and still has this physical result because they don’t have the experience or knowledge to process what PCOS is capable of. Conversely, my youngest sister in law also has PCOS, and she weighs less than 100 lbs. This disease affects women of all types. As more and more of us speak up and support one another, I believe that we can foster change and hopefully work toward finding a solution.

    In closing, CeCe, I have always found your message to be positive and supportive, and I would be saddened if you changed it because of this letter.

  • Muriel

    Just to say that I did appreciate reading this letter because it simply gave a different perspective to the problem.
    I am not a PCOS sufferer and I have learnt most of what I know from it through Cece’s blog. And I was under the impression that it was intrinsically linked to being overweight, and losing weight with it was virtually impossible.
    Now it looks like it is not true for everyone.
    Thanks Cece for posting this letter. You were right to do it. It simply highlights how complex PCOS can be.

  • Sarafina

    “Every persons weight/weight loss story is different and every PCOS story is different.” BINGO.

    226 lbs and PCOS here. I can tell you, it’s DAMN hard to lose weight – in my case the insulin resistance and weight gain go hand and hand.

  • Bee

    First I just found your blog through “HomeGrown”, and I love it!

    Second, PCOS is not well understood by anyone, you can go to different doctors and receive totally different definitions and options for assistance with the symptoms that are causing you the most grief. It is very true, FROM my experience, though that weight gain vs insulin resistance/ metabolic syndrome vs pcos is a tough battle. There is no cure, and to make matters worse it is such an individualized disease that few people will experience the exact same issues.

    If you become hopeless it is your own doing, find friends and folks who will help support you ( even take you out for a drink). Your health pcos or not is an important thing and there are benefits to eating healthy and getting good exercise regardless of the number on the scale.

    CeCe I love your blog! And I am glad folks are finally starting to talk about PCOS even if there are no set straight answers, which I believe to be a huge part of the problem.

  • Michelle

    OOOOOOOOOOH girl! My aunt was using insulin for treating her diabetes and the insulin helped her to a 50 pound weight gain!And then she was an article”Is you medicine cabinet making you fat”And it talked about already heaver people using insulin, and it mention a “miracle” replacement called BIATA!!!!!!! My aunt switched and because of how the imitation insulin helps control hunger and she lost the weight! you should talk to your doctor and see if thats an option!:) Good luck girl my prayers are with you.