PCOS – Let’s Not Be Silent Any More

Published September 18, 2009 by Fat Heffalump

This morning I finally took the time to read this article from ABC News by the rather fabulous Sabra Lane, who used to be the President of the Poly-cystic Ovarian Syndrome Association of Australia (POSAA) on the “hidden epidemic” of Poly-cystic Ovarian Syndrome (PCOS). A very comprehensive article on PCOS by Sabra, and though I disagree with the concept of “lifestyle changes” actually being of any use, the article outlines the difficulty of living with PCOS that at least 11% of Australian women face every day.

I actually wanted to talk about one particular sentence in that article tonight. And it’s this:
A study in the UK a couple of years ago found some PCOS women experience the same level of anxiety that breast cancer patients do.

I actually read the report from that study when it first came out. It sounds shocking doesn’t it? It sounds almost like an exaggeration, after all, how can women with a syndrome that isn’t terminal have as much anxiety as someone with cancer? After all, isn’t cancer the most terrifying, horrible thing that can happen to your health?
At the time I posed this question to a man I knew who had been through the cancer battle with his ex-wife. And his answer shocked me. He said “Well, I can understand that, because everyone steps up to help you when you’ve got cancer in your life, but most people don’t believe PCOS really exists, or that it’s any big deal to it’s sufferers.”
The more I thought about it, the more I can see it. Not that I’m diminishing the horrible impact of cancer on people’s lives, both sufferers and loved ones. I can think of nothing more devastating. But when it comes to anxiety, I can totally understand it.
After all, most women with PCOS have to fight for a long time to get a diagnosis. I myself had 20 long years of presenting to doctors with PCOS symptoms before I was diagnosed. We’re told we’re just too fat, lose weight and all our problems will go away, though anyone who knows anything about PCOS, knows that losing weight is extremely difficult for a PCOS sufferer. Even if we do lose weight, more often than not it makes not a lick of difference to our symptoms. It didn’t to mine, I maintain that it made them worse in most cases.
PCOS has been referred to as the “Ugly bitch disease” by some misogynistic douchebags. Because it causes weight gain, cystic acne, hirsuitism and hair loss (yep, you can have both at the same time!) and a myriad of other fun symptoms. I also believe it causes depression, though this has not been added to the official swag of symptoms yet. So as well as all the so called “ugly” symptoms, we’re also not always able to be shiny-happy women.
Is it any wonder we suffer anxiety as well?
PCOS also rips apart a woman’s self esteem. Because it tears apart the fabric of what women are usually expected to be in Western society – thin, clear skinned, hairless, cheerful and good breeders. As Sabra says:
PCOS is a hidden syndrome in our society, because it encompasses many social taboos: excessive hair, obese/overweight women, childless women, depressed women.

Which is also part of the reason why this doesn’t make news. News executives far prefer to concentrate on young, pretty, fertile women.

So consequently, most sufferers of PCOS feel anything but feminine and valuable. They believe themselves to be failures as women. They feel (and are often told by the douchebags of society) that they’re fat, ugly, hairy, stupid, lazy, gluttonous, barren, unfeminine failures. That they are worth less because they don’t fit some kind of ridiculous expectation of what a woman is supposed to be. Plus we’re not allowed to talk about it, because it’s taboo.
Is anyone still doubting that women with PCOS often suffer high anxiety? And that hasn’t even got into the vast physical pain we usually suffer in our reproductive cycle.
Here’s something I want to say to all the women with PCOS who might be reading this.
For about 4 years now, I’ve been actively seeking out other women with PCOS, or “cysters” as we’re known, to have women around me who know what it’s like to deal with all the icky things we cysters have to deal with, as quite often I didn’t really feel like I had the right to have “normal” women around me. I have met hundreds of cysters, both here and in the US when I travelled there almost 2 years ago, not to mention the hundreds I have met virtually through various online communities that I haven’t had the pleasure to meet face to face yet.
Those women have been incredible. Awesome. Amazing. Inspirational. Generous. Loving. Strong.
Beautiful.
I seem to be able to spot a cyster a mile away. There is a mix of outer vulnerability and yet deep inner strength that I can see straight away. I see the signs of low self esteem, but also signs of grit, strength and inner fortitude that most other people never need to develop. Cysters so often feel they have to fight, they have to work, they have to protect, they have to struggle just to get through day to day life. I believe that develops in them an incredible strength of character that many other people never develop.
Being active in the cysterhood has brought me so many amazing women into my life, who have given me so much love and kindness, I could never repay it back. It’s through loving them that I’ve found the ability to let go of all the PCOS self-loathing and love myself.
I want to give that back. I want to help cysters find the ability to love themselves. I want to build their self esteem like they built mine, to squash the demon of self-loathing that haunts cysters. The only way I know how to is to write. Then write some more. So I’m going to do that for my cysters.
Ladies, if you’re reading this and have PCOS, speak up here in the comments. I want you all to tell me a story about a cyster you know who is awesome. Because she probably feels like she’s a failure every day, just like you do. Let’s celebrate the cysterhood.

27 comments on “PCOS – Let’s Not Be Silent Any More

  • I'll tell you about a cyster that completely turned my life upside down.

    Her name is Kath.

    Kath is amazing. She has helped me learn and grow, both as a person and specifically as a woman more than pretty much anyone else I've met. Having PCOS pretty much destroys you because the things happening to you, you've been told are weird and abnormal. You're not like the other girls. What man would want you blah blah blah.

    I had low self-esteem growing up, primarily because of weight. Then add on the other symptoms a few years on and it's like "what the f*ck am I supposed to do?"

    At a point in my life where i finally got a diagnosis, i went looking for help and guidance. I found it with the cysters. Kath accepted me, embraced me, nurtured me (still does) to be a whole woman in society, despite all the bullshit i think stands in the way.

    She doesn't always do it directly, but the way she conducts herself, the way she stands up and is strong because she believes in herself and her worth, is so inspirational to me, that i just feed off of it. I doubt i would be the person I am now if it weren't for her.

    I love having her in my life and hope to have her in it until it ends.

  • marvelous post! I am also a cyster myself. I have learnt to accept and really love myself, and try to do also the same for a few -really awesome-cysters I know. Keep writing, keep smiling, keep loving, keep helping.
    Love from Athens, Greece.

  • Oh Kylie, you just made me cry!! You bugger! I love you girl, and you are AWESOME.

    Alexandra – thank you. Welcome to my humble blog, and it's lovely to meet another cyster, from far shores.

  • I haven't been diagnosed yet, but I do believe I have PCOS. I am 46 years old.

    The rub on this is that I have a lot of the symptoms: obesity (since the age of 5) male pattern baldness (since the age of 16), skin tags, dark colored patches, leg hair that grows like a crazy, anxiety attacks, depression, etc., etc.

    However, my periods are regular, every 28 days and I've had one child.

    So, I'm not sure what's wrong. I have lost the weight – 150+ pounds – two or three times, but it always comes back.

    I do have an appointment with the endocronologist at the end of this month – but, they always want to throw meds at you..try this, try this, try this. No testing, etc., etc. Then they try to make me eat a low carb diet. All this stuff may make me lose weight TEMPORARILY, but nothing lasts.

    What do you guys think? Is it possible to have PCOS and still have a normal menstral cycle schedule?

    Thanks for the advice.

  • FWIW, lahorton, I had periods every three weeks when not on the pill. But they hurt in a way that no ibuprofen could put a dent in. And I had all the other symptoms; they diagnosed me off lab work (fasting insulin and free testosterone, the former being elevated and the latter off the charts). I would think an endo specialist would want to see those numbers before they throw drugs and diets at you!

    And thank you for this post, Sleepydumpling. Everything you've said is so true, and I often forget all I've had to deal with and try to dismiss it like it's nothing. It's definitely not nothing.

    Andee (Meowser)

  • Thanks for another call to cysterhood post, Sleepydumpling! It's weird how much of my "otherness" that I never associated with PCOS. I mean, I've always been fat, but about the time that I was diagnosed with PCOS, everything you described starting getting way out of control. The acne, the hirsuitism, the crazy painful periods, the hair loss (though this is very slight for me, thankfully-good hair genes), and especially the depression. I don't know why I didn't connect the dots. I guess I always just figured I was "different". Of course, doctors telling me that losing weight would cure that difference probably helped skew reality a bit. Thanks again for giving perspective to this.
    It seems to me like there are different experiences for different PCOS sufferers. I'd wondered for a long time if there really was such a thing as PCOS and if I really had it. Many women around me were being diagnosed with PCOS as well, but didn't have the same symptoms that I did. Where I've bled for years, they hadn't had their periods at all, just horrible cramps. They didn't experience the hair growth or loss. The weight gain was a pretty common factor, though. I'm interested to see how it is for others. When you say you can spot a cyster by looking at them, I'm very intrigued. I hope you'll let us know more about that. I'd like to be able to spot kindred spirits in the same way, without having to wear "PCOS" on a nametag. *laughs*
    I think you may be right about the anxiety related to PCOS, too. This "otherness" and depression has really diminished my hope over the years, and I almost feel like if I got the breast cancer diagnosis, it wouldn't be as scary to me as what I've suffered already. But maybe I'm exaggerating, and may I never know for sure.
    Thanks again for bringing some normality to something that can make you feel so …un-normal. I'm really glad we're all talking about this.

  • I'm a fortunate cyster who was diagnosed very young. They had an incling of what I had when I was 16 in Tennessee but doctors there are of the opinion "Put her on birth control she'll be fine." So we waited until we moved to Iowa to get a second opinion. Well tests came back, at 17 I was diagnosed, now at 20, almost 21, I stumbled into a group Kath is in, a few months and she's pointed me in some directions I never would have gone in had she not said something. So thank you Kath, you've been a big help, and a great inspiration to me as a cyster and as a young woman.

  • lahorton, that's the thing with PCOS, it's like there is this big suite of symptoms, and each of us gets our own cherry-picked set of that suite. Like a giant combination lock, with rows of numbers, each of us has a different combo. And that makes it all that much harder to get a diagnosis and help.

    sweetnfat – maybe it's because I've spent the past 4 or 5 years seeking out cysters that I've developed a sense for them? I dunno, I just find myself talking to women and then they say something and I'm like "I have PCOS", to which they reply "OMG! Me too!"

    Thank you all for your compliments and kudos. I'm just blundering here talking about what I think and feel, it's good to know it's pushing some of the right buttons.

    As for "un-normality", ladies, a very wise six year old once said "Normal is whatever you are."

  • *cheers*

    This is a fantastic post. I don't really have anything useful to add, just wanted to say a big HELL YEAH to the whole thing.

    Also "normal is whatever you are" may become my new catch-phrase.

  • Hi, everyone!

    I also think you can recognize a Cyster by sight, because I read a study that says that almost any woman with hirsutism has PCOS. so when I see another woman with beard stubble, I know she's one of us. I've had a lot of luck with Vaniqua controlling my facial hair, and I always have to fight the urge to volunteer that information. But I feel like it would be similar to someone volunteering information to one of us about the miracle of dieting, and I don't want to be that person!

    I guess the difference is that Vaniqua DOES work. But still, I don't want to make another woman realize that her stubble is that obvious. What do you think? Should I say anything?

  • I have PCOS, and was fortunate to be diagnosed while still in high school. I am on anti-depressants, birth control and Metformin. While I initially got the "loose weight now" speech from my primary care doctor, I never beat myself up about not being able to. Now I am cautious about eating too much sugar, since my insulin levels are wacky and try to eat fairly wholesome foods when I can. I am fortunate that my antidepressant medications work well and have worked for 4 years now. I have some extra facial hair and mild acne, but I am able to keep them under control with over the counter remedies. The hair on my head has thinned a bit, but I had very thick hair to begin with, so it has not become a major problem. Sometimes I worry about my future fertility, should I choose to have my own children in the next decade or so. The weight used to be the biggest problem, but the fat-o-sphere has really helped with my self confidence and the way I take care of myself. I am thankful for all the blessings I have, and the relaitive health that I possess. It is important that PCOS be more acknowledged and responsibly treated. It effects such a large number of women that I know, thin and fat and in between. It seems like a very common problem, that is ignored and put on the back burner by a lot of physicians. Talking about it is such a great way to let women know that there may be treatments for some of the problems they have suffered in silence for years.

  • OptimisticCystic – do be careful with picking up on physical symptoms. Most cysters have terribly low self esteem, and while we may be hypersensitive and observant to things like hirsuitism, cystic acne, acanthosis nigricans etc, no woman wants to be identified by her physical symptoms. I don't believe anyone should bring up any external symptoms unless the sufferer does first. There is such vulnerability there, and I can't imagine anything more upsetting.

    I know myself I'd be horrified if anyone, even a cyster, said something without my bringing it up first.

    I have heard mixed reports on Vaniqua (and it's not available everywhere either – very hard to get here in Australia), like a lot of medications it seems to work for some but not others.

    Personally I don't even notice the physical symptoms on a cyster unless she draws my attention to it. I guess I just am not one for taking big notice of peoples appearance (probably because I've got crap eyesight). For me it's the way she carries herself, that mix of vulnerability and strength that is the giveaway.

  • Let me tell you about a woman I know.

    Woman A was a dairy farmer's daughter, married young, with perfect 'A' grade marks (OP 1 by today's standards). She cleaned toilets after high school and having married a pig farmer committed herself to a life of feeding times and branding.

    Plagued by low self esteem she continued along this trajectory for many years. As a child she shared her birthday with her younger sister (they were born exactly 1 year apart) and was given brown clothes and umbrellas for her birthday while her sister was given pretty blue alternatives. Her family continued to explain to her that she is the ugly daughter (the only daughter with PCOS) and that her little bouncy blonde and blue eyed sister would be a perfect wife and mother. Although the heir and a spare mentality existed in her family home (confusingly this was a matriarchal household), where one daughter is reared to look after their parents and is not EVER encouraged to marry, woman A was encouraged to complete her sister's homework but not to appear intelligent or confident.

    At the age of 21 woman A had a child (and passed on the PCOS legacy). She worked as a milkman with her husband and committed her above average intelligence (163 last time it was measured) to book keeping and baby formulas. Slowly gaining weight by around 24 yo despite the fact that she ran the streets of Bardon (and for those who don't know Bardon is damn hilly) delivering milk.

    After a few years Woman A along with her husband decided it was time to add another baby to the family. After trying for some time she was told that she was infertile and to consider buying a puppy. Woman A accepted the doctor's advice and diverted all her energy into ensuring that her daughter would not have poor self esteem and that she would be encouraged to develop in her own way.

    8 years after the birth of her baby girl she was diagnosed with a tumour, told to go home and prepare for the worst.

    During the pre operative preparations they decided to do some preliminary examinations and accidentally discovered a heartbeat. This tumour is now 18 years old, his name is Mackenzie and he is my adorable yet occasionally annoying baby brother.

    Woman A, my mother, researched her health symptoms herself and discovered that she had PCOS well before PCOS was commonly understood.

    For some women a diagnosis can be heartbreaking but for others it can be empowering, teaching women to embrace their bodies and accept the things (often symptoms) that they can not change.

    Almost all of the Cysters that I have met have an integrity about them that suggests that while they suffer with a myriad of symptoms and may well be in immense pain they will still manage to kick your arse if you, in some way, kick another Cyster while she is down.

    Today my mother still experiencing symptoms such as depression, hirsuitism and severe menstrual pains, has a PhD in feminist women's literature and has recently returned from lecturing at Oxford. I hope that for some women living in an environment where they need to contend with PCOS symptoms and the social stigma that can attach to these symptoms, they can embrace the inner strength that is required to live their daily lives and become stronger, happier and healthier women.

  • Just a quick question….is there anything that can be done for PCOS…or, is this just a genetic condition that will cause all these lovely symptoms and you just have to learn to live with it? What's the point of being diagnosed, if there's nothing that can be done?

  • Some of the treatments that are out there work really well for some cysters and not for others. I have had some help from Metformin in regulating my cycle (and I know it makes me ovulate). I've also heard it can help with a bunch of other things for other cysters. Some ladies swear by spiro. If you want to try these things to see if they help you, do talk to a good doctor.

    Hopefully those specialists out there doing lots of research will help find some bigger answers that will help us all.

  • I'm hoping for something to help the weight loss issue. My weight is WAY up there – 300+. At this point, I can lose about 20 pounds and then it rebounds right back on up there. I know there's no magic pill, but I'm hoping that something can regulate my metabolism, or whatever the issue is.

  • Definitely get a hold of Kate Harding and Marianne Kirby's book "Lessons from the Fatosphere" (Australian title "Screw Inner Beauty"). Intuitive eating/moving for enjoyment is a great path to improve your health (rather than being concerned about your weight) overall. It's been a real eye opener for me.

  • Well Sleepydumpling, just got back from my endocronologist….she was a tad irritated that I had gone off of my Synthroid, Metformin and Byetta last year. My numbers weren't so good. So, now we're back to square one. I keep trying to be a "normal" person and not have to take meds all the time to be well, but obviously, it's not going to work out for me. It's pretty much impossible to lose weight without the thyroid meds. She told me that PCOS quadruples my chances of having a heart attack – add that to obesity and we've got a recipe for disaster. So, I'll pick up the prescriptions today and get back to trying to eat a lower carb (not as low as Atkins by a long shot) and exercise more.

  • Cool! I really do think you'll have some lightbulb moments like I have been. Where you just go "OMG!" At least I hope you do.

    • I would say that’s probably damn huge irony! As someone who has had ED’s since I was about 10, it makes a lot of lightbulbs go on!

  • I have PCOS, possibly another comorbid condition too, I have various symptoms, but it took long enough for them to diagnose me with PCOS I’ve given up on doctors to be willing to help me at all. My latest one saw that I have PCOS on my chart but nagged me about losing weight anyway – just as I was beginning to come out of recovery on my ED (restrictive, not binging, despite what people who see my weight might think.) The pill makes my already terrible migraines uncontrollabe, constant, and terrifyingly painful to the point of feeling I may have a stroke, so I can’t take that. My blood sugar is normal so no one will put me on metformin. I’m not sure what other treatment they might want to give or not give. My last doctor, when I complained of the horrible pain I have from the combination of cysts+internal scarring, didn’t believe me, didn’t believe it could be cysts, sent me to get an MRI without telling me what it was for, and the people at the MRI center said she wanted them to look at my back. She figured I had back pain because of my weight, not ovarian pain because of my cysts. Then she sent me to physical therapy. Of course the very next time my irregular menstrual cycle came around, I had pain in the exact same hideous way. I never went back to her.

    The irony of it all, if it is an irony, and how this crosses over with FA, is this: there’s good evidence eating disorders are one contributing cause to PCOS, and while there are biological causes to EDs as they are now finding out, if girls weren’t encouraged to diet from a very young age, many women who have them would not have that particular brain chemistry problem triggered. Alternatively, the pressure women and girls with PCOS experience to lose weight can trigger anorexia.

    http://www.todaysdietitian.com/newarchives/oct2006pg32.shtml
    http://www.raderprograms.com/special-issues/pcos

  • i hav pcos and i get really depressed sometimes. feel so happy to be around so many cysters. pls help and support me in my path of life. i’m 21 bytheway. takin metformin regularly and now 56kgs…

    my id : moni.monisha88@gmail.com

  • Comments are closed.

    %d bloggers like this: