PCOS in the Fatosphere

Published September 3, 2009 by Fat Heffalump

Before I get into the meat and veg of this post, did you see my new mascot, there on the right? That’s my new heffalump, created by the rather talented Luke Bamkin. I have got plans to change the whole layout of the blog more and feature this art more prominently, but I wanted to pop my new friend up there straight away, with her shiny, round, fat buttocks. Cute huh?

Tonight I want to talk some more about PCOS and fat acceptance. I suffer PCOS, and for some years have been quite active in the “cysterhood”. Finding women out there that knew all the things I was going through was a hugely healing and strengthening process for me, as prior to being welcomed into the cysterhood, I had always felt inadequate and somehow less than other women. Mostly because I didn’t fit what was sold to me as normal for a woman physically. Not just in my body shape and size, but because my body didn’t do things that other women’s bodies seemed to do naturally. And as my fellow cysters know all too well, sometimes our bodies do extra things that other women’s bodies do not do.
To start with, it was nightmarish for me to get a diagnosis of what was wrong with me. In hindsight, I first presented to a doctor with PCOS symptoms when I was 12 years old. I was first officially diagnosed an astonishing 20 years later! Can you believe it? For 20 years I went to doctor after doctor after doctor with all of these things that were happening to me, only to be either misdiagnosed or fobbed off.
And of course, the most common response from doctors in that 20 years was “Lose weight.” With no explanation of what losing weight would actually do (other than make me thin) or what was wrong with me. I can remember at 19 going to the doctor after having bled heavily and been in pain for 18 months straight and his treatment? “Go and lose some weight and find yourself a bloke, when you’re ready to have babies, we’ll look at it all.”
How this is not grossly negligent, I do not know. But it was indicative of most of the “treatment” that I got over that 20 years. PCOS sufferers often suffer debilitating depression as a result of the vast amounts of hormones flooding their bodies, but can you imagine what this kind of treatment at the hands of the medical profession does to women who already have low self esteem, feel unfeminine and who often live in vast amounts of pain?
However, at 32 years of age, I finally got a diagnosis. With a very good doctor who was, and is, the most sensitive I have ever encountered and I’ve been her patient ever since. However, her first treatment was to get me losing weight. Being the good girl, I followed her advice, and we tried a LOT of things to get me to lose weight. From food diaries to Metformin to the worst of them all… duramine (legally prescribed speed – EVIL stuff).
I joined a lot of PCOS groups and forums online. I met literally hundreds of amazing women, some of whom I am now lucky to call my dearest friends, all over the world. But the entire culture of “fat is evil” is rampant within the cystersphere, from high profile cysters who have their own boards who promote boot camps and radically restrictive diets, which I believe are projections of their own fat fear and self hatred, to the high promotion of weight loss surgery, diet fads that come and go, and many frightening medications that make cysters very, very sick with their side effects (oh that duramine!)
As per my last post, I did lose weight, a LOT of weight (though not with the duramine, that shit nearly killed me) and guess what? My PCOS symptoms got worse. And I fell apart, emotionally, mentally and physically.
But as hitting rock bottom often is, it was the push I needed to start swimming to the surface in my life. The fabulous GP referred me to a psychologist who specialises in cognitive behavioural therapy. It was the best thing that ever happened to me.
It started with finding some confidence. Not being so hard on myself. Building up the self esteem. I started reaching out to other cysters the way many had reached out to me, because I want to give back and the feeling of seeing a new cyster friend hit that moment of “Oh my God I am NOT a FREAK!” is just wonderful. I started pushing back gently with my GP about the weight loss thing, and amazingly, she has responded positively. I gave up the Metformin (which I will admit, did give me a clockwork cycle if nothing else) and found the fat acceptance movement. I stopped obsessing about food and exercise and my body and focused on feeling good, inside and out. And I feel healthier than ever right now.
I really feel that we cysters are put through so much. To start with our bodies aren’t like “normal” women’s bodies, and that not only causes us pain and low self esteem, but it worries us as well. Then we go through the whole cycle of doctors telling us we’re too fat, lose weight and our troubles will go away which is so often simply not true. Then they shove us through all kinds of invasive, painful and humiliating medical procedures and drugs to try to get us to lose weight. Let alone the ones they foist on us if we want to have babies, which so often just don’t work either. Finally they wash their hands of us once we either finish our breeding or decide not to breed. As though the value of our health is only valid when we are breeding. And finally when we do reach menopause, they ignore the fact that it is more likely for us to have traumatic menopause because of the different hormone patterns.
If you’re a sufferer of PCOS, leave me a comment, tell me your experiences. Particularly around fat acceptance/discrimination with your PCOS.
I want to connect cysters up within the fatosphere, without all of the fat hatred and the “You must lose weight or you’re never going to survive PCOS” schtick. I want to connect up the single cysters, the lesbian cysters, the very young cysters and the older cysters, the cysters who have chosen not to have children or who have reached the end of that fight. I want it to be about who you are as wonderful, strong, resilient women, not about your body shape and breeding abilities.
Most of all, I want cysters to find their self esteem, to learn that they are awesome women and that the healthiest thing you can do is learn to love yourself.

23 comments on “PCOS in the Fatosphere

  • yup pcos totally sux. when i was diagnosed (while in the hospital for appendicitis) i was 24 and to be honest i had never even heard of pcos! that is how pathetic the gp's i had been seeing my whole life were! i soon discovered all the horrible crazy body things i had been experiencing since i was 12 years old were all symptoms of pcos!! and the only thing my gp's ever suggested was causing these problems was my weight! lose weight and all my problems would just dissapear! not likely! lol. thanks to the internet i was able to research pcos and lurk on a few forums and i (like probably every girl with pcos that turns to the internet for support and information) had that moment that you spoke about! that OHMYGOD IM NOT A FREAK???! moment! it was amazing. and i know exactly what you mean – feeling like you were less than other women, inadaquate, that is EXACTLY how i felt my whole post-pubescent life until about a year ago. i had internalised so much self hatred, fear, shame and convinced myself i was the only woman in the world that experienced all this crazy body stuff and felt the way i did. it sucked! when i look back now i feel like fate (or something!) stepped in and caused my appendix to burst so that i would be forced to go to hospital and my pcos (which was seriously fucking up my life) would be un-covered! its amazing how not feeling like a freak anymore can really change your life!

    when it comes to the cystersphere i am not involved – i lurk for information but thats about it. they are all so obsessed with weight loss and metformin and babies that i just can't be apart of it lol! FH it is so great to read someone blogging about pcos and NOT advocating weight loss! great post 🙂 x kiki.

  • When I started blogging in the fatosphere my (now defunct) blog was supposed to be a starting point for a HAES-based website for women with PCOS and/or hypothyroidism (those being the two endocrine problems I have been diagnosed with so far).

  • I was diagnosed with PCOS a little over 4 years ago. Like you I saw many doctors in my 20s, but no one was able to tell me what was wrong.

    I had an awesome doctor, who mentioned weight loss, but didn't push it. I however, pushed myself, and basically starved 30 pounds off my body in two months. It was bad.

    I've said before that I believe doctors still don't truly know how to treat PCOS. I take Metforim and Spironolactone, but I dont know if it has really helped.


  • Thank you for this post. I apologize; this'll be a little long.
    I was diagnosed with PCOS about 6 years ago. I was sent to an endocrinologist, who seemed very knowledgeable, but not enough to really explain to me exactly what was going on. The advice from everyone who'd give it was, of course, "lose weight". Easier said than done, especially having been a fat girl all my life.
    He put me on Metformin and said that when I lost the weight, "things just have a way of working themselves out. The PCOS shouldn't be an issue after that." I was only 18, but I just knew that was bull. I couldn't explain to anybody why, so I looked like a lone nut who didn't want to try. So I tried for a while. I hated the Metformin. It made me so sick to my stomach that I ended up leaving a class one day. (I never have that kind of reaction to anything.) And after an astounding 26lb weight loss in 2 months using the stuff, my periods were still constant, if not heavier. I was done. I just washed my hands of the doctors and the metformin and have just…lived with PCOS.
    When I tell people that I've been bleeding constantly for 6 years, they're amazed. They don't know how I do it. *shrug* I have to. I didn't have insurance for nearly five years, so even if I'd wanted to see a doctor about it, it was out of the question. Now that I have it, I just don't want to deal with trying to find the right doctor. I've gone six years by myself. What's another few, right? I know that's an unhealthy attitude, but I'm hoping you all can sympathize.
    I'd like to echo noise generation's reply that I'm happy to see someone talking about PCOS without touting weight loss as "THE ONLY ANSWER." It makes me feel less freakish, less like I'm just being lazy and irresponsible with my health. Are there other answers though? The weight loss is a sisyphean task, to say the least, and it yielded no results beyond a smaller waistline for me (which I don't give two rat's behinds about). I'd asked about a hysterectomy way back when, but they told me that I didn't want to do that. What if I wanted children? …what if.
    I'm actually surprised that you mention the pain and the depression. I guess I hadn't thought that it might come from the PCOS. But maybe it does. I really appreciate you shedding some light on this, and I look forward to more posts about your experiences and your feelings about PCOS.

  • Oh, I can so identify with this. I can't deal with the weight-loss obsession at the boards you're talking about either (if weight loss is the answer, why did I have the same symptoms at 18 to 24 years old and 125 to 140 pounds?), and I don't have any desire to get pregnant, either. The reason I'm interested is for the other stuff — what do you take if you can't tolerate metformin? how do you deal with hair loss and hirsutism and fatigue? That kind of stuff.

    They've already established that removing 25 pounds of abdominal fat through liposuction doesn't improve insulin sensitivity (or any other health indicator either) at all. Not even a little. And when you tell people that they look at you like you're from another planet. So really, those boards are just thinness fetishism under a different name, far as I'm concerned.

    Andee (Meowser)

  • Wow! Seems like I've hit a nerve with this post. I'm glad I decided to speak up – I have oft felt like the lone crazy voice out there saying "But wait… something doesn't add up!"

    Not only for the weight loss obsessions, the invasive medications, the depression and pain, but also the exclusion of some cysters from the support and medical treatment.

    Thank you all for posting and watch this space. I will be working some more on fat acceptance for cysters (and the peripheral stuff that goes with being a fat cyster) in the future.

  • sweetnfat – just an aside for you – bleeding for six years is a very, very traumatic thing. It is WRONG that due to insurance and crap doctors you can't get help. I'm so sorry to hear you're suffering this long.

    Do take care of your iron levels at least – you gotta be losing a lot of iron and Vitamin C in there honey.

  • dang, i'm at work and about to cry!! , because i have struggled with all of this for 17 years now and i came from a different country where they also told me to lose weight and i did and nothing changed and i felt awful every year when going through my closet all i do is get bigger size clothes. i found the diagnosis 7 years ago in the states after getting married and took metformin since then, i lost some weight and got 2 kids but now i am still overweight and no periods , which was my problem to start with. metformin makes me sick and i'm up to the highest dose. it is just not working, but i wish i could look prittier just like when i got married,i just sometimes wanna cry, even though my hubby says that i'm still beautiful in his eyes. i have even thought of the idea of getting a gastric bypass, but i don't qualify, and my hubby doesn't want me to.
    i wish there was a way out of this.

  • Andrea, I have been where you are. It sucks, but there IS light at the end of the tunnel.

    My advice is to get reading lots of fat acceptance blogs. Start with Shapely Prose http://www.shapelyprose.com and any that are linked to the lovely ladies here in these comments.

    I will also add a blog roll over the weekend of the FA blogs that I like.

    They will make you feel beautiful and help you find your confidence.

  • You know, the Fat-o-sphere seems to be a strangely disturbing reflection of the inside of my head, kind of the same way that Dilbert is.

    I literally started writing a post about this yesterday, but frankly I'm glad someone a bit more experienced with PCOS/FA has done it, because everyone else always seems much more eloquent than me!

    I was officially diagnosed with PCOS a couple of weeks ago, by a thankfully excellent doctor (who specialises in women’s hormonal disorders), who mentioned weight as a side effect of PCOS, not a cause, and made sure to explain to me that PCOS is genetic/environmental and IS NOT CAUSED BY WEIGHT.

    I've posted about it a little on my blog, but the summary basically is this. He did a stack of tests and found that I have elevated testosterone, low cortisol, unstable insulin and practically non-existent progesterone, resulting in oestrogen dominance. He told me that oestrogen and progesterone should be about the same – my oestrogen is 22, progesterone 0.2, so he's started me on progesterone, which after 2 weeks has already made a massive difference to how I feel (and I think I'm about to get my period for the first time since February). He will look at treating the insulin and cortisol issues after I have been taking the progesterone for a couple of months.

    But the prevalence of the weight-loss mindset in the PCOS communities makes me want to cry. I'm so glad I found FA before I found the cysters – if it had been the other way around I'm sure I would have been caught up in what I can now only imagine as a kind of personal hell.

    PCOS makes you fat. PCOS makes it hard to lose weight. The only treatment for PCOS is to lose weight. Being fat gives you PCOS. It’s never-ending blame and shame, and it’s always the woman’s fault. I can’t stand to see doctors and other cysters perpetuating this cycle.

    I really wish that every woman could have a doctor as good as mine, who will treat the underlying problems and not just send them away with a prescription for weight loss which may or may not make any difference even if they can achieve it. Because that's not medicine – it's just plain lazy.

    Umm, I’m going to stop here before I write an entire post in your comments section!

    Suffice to say you have hit a very raw nerve, and I can’t wait to see more posts on this subject, and write my own! The more the better, right??

  • @sweetnfat babe that totally sux that you have to go it alone because of insurance and because you cant find a good doctor. i feel for you and my heart goes out to you. bleeding for 6 years is just a nightmare, i really hope that you can find a good doctor and get the medical care that you need and deserve!

    thanks to miss sleepydumpling reccomending me a wonderful gp i have now found a great local doctor and i am really optimistic about my pcos situation for the first time!!

    @andrea aww babe *hugs*. i remember feeling the same way and desperately wanting to get gastric bypass or lap band surgery. thankfully I snapped out of it. i got invloved in the fatosphere, the fa community and i started to accept myself just the way i am. FAT. i second what sleepdumpling said about getting reading some fat acceptance materials, blogs, books, etc. A great book is 'lessons from the fatosphere' by marianne kirby and kate harding. also, another huge thing that helped me on my journey to body acceptance was the fatshionista flickr group – all those photos of cute fat chicks showing off their hot outfits really helped me to change my thinking about my own body. i really hope you check out some of the fat acceptance blogs at least, they are just such a great resource when you are feeling down on yourself. all the best babe 🙂 x kiki.

  • randomquorum – write! Write about it. In fact, all of you here that have PCOS and have a blog, please, PLEASE write about this. Because unless we do, the myths of PCOS are perpetuated. Even if it's just to share links, or point to an article, write about PCOS and fat acceptance please.

    I shall certainly be writing some more myself as time rolls by.

    kiki – I am thrilled that you like Doc Jo as much as I do. She's a darling and she's so thorough too.

  • I was diagnosed with PCOS after Brian and I got married. We had been trying to get conceive, and after 10 months of negative pregancy tests and no AF, I went to see a specialist who looked at me, drew blood, and said, "Yep, it's PCOS. Call me back when you want to get pregnant, and can afford it." I never walked back into his office again.

    I have a wonderful family doctor now, who does everything in her power to help me. You did forget to mention those of us who go to the most extremes, like having weight loss surgery, in the hopes that we regain our fertility, and can one day have the family we pray and hope for every minute of our lives.

  • All cysters are more than welcome!

    I actually don't mention weight loss surgery (WLS) because as a fat acceptance activist, I personally don't believe in WLS. But I cast no aspersions against those who do make those choices.

    Just a clarification though:

    One thing to know about fat activisim is that all body modification (diets, excessive exercise to lose weight, WLS, liposuction etc) is discouraged, simply because fat acceptance is about pushing back against the expectation on us to lose/remove weight to make ourselves "better" or "healthier". Health at Any Size (HAES) is about health being exclusive of what size and shape your body is.

    However that doesn't mean those under fat activism think any less of those who do chose to use body modification.

  • I was diagnosed @ 19, after not having a period for 6 months. This was in 1995. The ARNP who I saw immediately did blood work and found elevated androgen. I suspect she may have been suspicious due to my very furry upper, inner thighs. She put me on BC pills and told me to lose weight. I have considered going to an endricinologist, but don't really want to pay the huge specialist copay. I am somewhat interested in taking sprironlactone to get the androgen levels down, but am afraid that will totally kill my libido (which is down due to BC pills). Last fall I stopped taking my BC pills, just to see what happened. While my libido came back in full force :D, I also noticed a darkening of hair on my arms (its blond normally) and an increase in facial hair and acne. 😦 Strangely enough, I DID continue having cycles during this time. I'm 34 years old, and have been married just over a year. My husband has had testicular cancer, so even if I didn't have PCOS we would not be able to have kids without intervention. I think it really sucks that all we're told is to lose weight, when losing weight is so much harder for us. You can bet that if this were a disease which affected men and their hormones, a much better way of treating it would have been found by now. :/ At this point, I'm resigned to it, but I'm SO tired of the PCOS.

  • wenjojen – I totally know how you feel. And the fear that the symptoms of PCOS are going to "get worse" is a really valid one.

    Funny thing is though, I've stopped taking any and all medication, and I'm back up to my fattest… and the symptoms haven't got any worse. Some of them have got better. And I'm without all the hangups and side effects from the medication.

  • same for me SD – i've stopped taking all my pcos medication (BC, metformin etc) symptoms have DECREASED and thankfully I haven't had ovary pain in about 2 months… i never lost any weight on metformin, all it ever did was make me feel sick and dizzy at work all day everyday :/ i think my combo of anxiety meds / asthma meds make it impossible for the metformin to do anything to my weight lol. not that i care about losing weight but try telling that to your gp!!! lol.

  • Metformin didn't do a jot for me with the weight thing either, even though it was the holy grail of drugs that was supposed to "fix everything". It did give me a regular, 28 day cycle, but otherwise… diddly squat!

  • I was diagnosed 4ish or 5ish years ago, at ~15 years old, after I forced my mom to take me to the GYN for not having had a period in 5 months.

    The doctor just talked at me a little bit (there were probably yes/no questions involved, but I can’t remember a one), then sent me to get blood work, so thankfully, unlike many other cysters, I didn’t get the whole “go lose weight” and run-around from numerous doctors.

    But being so young, I didn’t really have PCOS described to me in detail. I still feel I don’t fully understand it. I just know it terrifies me, not knowing if I can be a mommy one day like I want to.

    I feel fortunate in that my symptoms aren’t very physical. I don’t have really bad acne, or male-pattern hair growth. I lost a bunch of weight on a really evil diet–gained most, but not all, back.

    When I think about PCOS, I get really scared without knowing why. I also get really sad. I don’t know anyone else personally who has it, even though apparently 1/10 women do, so I have no support community. And the vaaaast majority of online communities are way too obsessed about weight loss; I avoid them just because they remind me of the evil diet that was slowly leading me to an ED.

    I try to discuss having children with my gyn, but since I’m only a young college student, she doesn’t ever lay things out concretely. She vaguely mentions that we’d take measures and that I’d have to lose weight. I’m not strong enough to debate the weight part or to ask her to help me make a more concrete plan. I mean, is there really a point when I’ve never even had a relationship (and that doesn’t look like it’s going to change)?

    And now for the final feeling I get when I consider me, my PCOS, and my future: hopelessness.

    I’m so glad I perused the comments here, though, and found the link to the shapely prose PCOS group. (:

    • It’s really tough being a woman who isn’t concerned about breeding or losing weight when it comes to PCOS. There ARE communities out there, and it isn’t all hopelessness.

      I can recommend a Yahoo mailing list if anyone is interested.

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