More Talk about PCOS

A question came up on a forum today about PCOS and whether sufferers are a genetic “throw back” for want of a better term to earlier times of famine and higher birth rates.  I had heard this theory before, or something very much like it, when I went to the Polycystic Ovarian Syndrome Association of Australia (POSAA) conference a few years back, when Dr Warren Kidson, a leading endocrinologist and researcher into PCOS and insulin resistance in Australia, was talking about a similar concept.

I Googled Dr Kidson to see if I could find any relevant articles to share with the ladies, and I found a few interesting pieces.

The first was this transcript from the George Negus Tonight programme on the ABC (Australian Broadcasting Corporation – our public media network in Australia for those who are overseas).  It’s a fascinating interview with a couple of PCOS sufferers (and brave ladies too) that is well worth reading.  The quote that really popped out at me was from Dr Kidson

For years, when a woman would come to us and say that she dieted and exercised and couldn’t lose weight, we used to think that she was cheating – she was a liar, she didn’t diet, she didn’t exercise. But we’ve now come to realise that we were wrong – that these people try very, very hard, and despite diet and exercise, they just cannot lose weight.

I remember bursting into tears at the POSAA conference when Dr Kidson said pretty much the same thing, though I remember him using the words “Ladies, you are not disgusting pigs.” which really hit home with me.

Dr Kidson’s quote above shows the attitude of many doctors still out there, all around the world.  While many are starting to change their attitude, there are still a lot of them that still hold the attitude that women who cannot lose weight with a healthy lifestyle are cheating or liars.  I’m very thankful that Dr Kidson is working very hard to change this attitude.

I’ve mentioned before that for many years (20 in fact) I was not diagnosed with PCOS, just told that I was too fat and to come back when I’d lost weight and wanted to have babies.  In that time I was in absolute agony, dealing with a whole host of other symptoms (none of which were pleasant), violently struggling with poor nutrition due to constantly starving myself and battling crippling depression which has now been linked to PCOS.

The other link that I stumbled across was this one from the POSAA website, titled “What Every Woman and her Doctor Should Know About PCOS“.  It links to a PDF file of a paper in common language that Dr Kidson and Dr James Mackenzie Talbot wrote a few years back for women to take to their doctors.  Copies were handed out at the POSAA conference, as the good doctors hadn’t yet been able to have the medical paper version published in the Australian Medical journal yet.

I photocopied it and took it to my doc, who is a lovely lady and she promised to read it.  When I returned on my next visit, she mentioned that she had read it, and that “Perhaps we need to try a different tactic.”  I think this might have been one of the catalysts to a turning point in how she treats PCOS.

About six months later I went in to see her and she greeted me with “Hey!  Your doctor fellows have had their paper published!”  I was so glad to hear that it had gone out in medical journals for other doctors to read, in the hope that they might change their attitude in treating women with PCOS.

If  you have PCOS, or you suspect that you  might, please download the PDF, print it out and take it to your doctor.   It is useful for non-Aussies too. Highlight the bits that you match up with symptom wise.  If your doctor will not listen to your suspicions on your health, find another doctor.

After all, you, or the medical insurance you pay for, is paying for them.

PCOS – Let’s Not Be Silent Any More

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.