guide for women coping with the condition, and it was a struggle to get interest from newspapers, TV or the medical community, but slowly and surely we did just that.
With the fantastic rise of websites, from Verity in the UK to PCOSupport in the US and Australia, and chat rooms where women from all over the world can share their thoughts and questions, the world of PCOS in 2006 is a very different place. Even celebrities with PCOS have finally come forward and increased media interest.
Yet many of us still feel that PCOS is taking over our lives and emotions and leaving us feeling out of control, as these quotes from women like us show:
‘Some days when my symptoms flare up I find it hard to leave the house. How could I with hair sprouting on my chin, a bloated stomach and acne breaking out? On days like that people have no idea how tough it is for me even to do routine things, like shopping or running errands.’
‘This thing is so hard to deal with. Not only is it impossible for me to lose weight but I’m finding it hard to get pregnant. I got married a few years ago, and whenever people ask why we’re delaying starting a family and I tell them I’ve got PCOS, their eyes glaze over.’
‘The symptoms of PCOS strike at the heart of my femininity; they attack the very heart of who and what I am. I’m always tired and my libido is nonexistent. I can’t imagine why any man would want to cuddle up to me.’
And this is backed up by research – here’s an extract from a recent study into the psychology of PCOS:
Previous research on polycystic ovarian syndrome (PCOS) has overwhelmingly been conducted within a medical or psychiatric framework, and has failed to explore women’s own experience of the syndrome. Interviews were conducted with 30 women with PCOS recruited through a national self-help organization. Thematic analysis of the interviews revealed pervasive reports of feeling ‘freakish’, ‘abnormal’, and not ‘proper’ women. These feelings were related to three symptoms commonly experienced by women with PCOS:‘excess’ hair growth, irregular, absent or disrupted periods, and infertility. Smooth hairless bodies and faces, regular menstruation and the capacity to bear children were associated with femininity, and as a result of their symptoms women expressed feeling ‘different’ from other women and less ‘feminine’. The results are discussed and it’s suggested that polycystic ovarian syndrome is a deeply stigmatizing condition, ‘a theft of womanhood’, with far-reaching implications for all women, whether or not they conform to ‘feminine’ norms.1
Other research2 confirms the seriousness of the emotional impact that PCOS can have on the quality of everyday life and our love lives.
In other words, PCOS isn’t just about your ovaries or your medical tests. It’s about the whole of you – mind, body and spirit.
Whether you’re dealing with weight issues, struggling with facial hair, feeling frustrated with fertility, having the odd sensation that you just don’t feel quite right, or worrying about your increased risk of diabetes or heart disease, there’s little doubt that having PCOS can prevent you from wholeheartedly embracing your life. It can make you feel swamped. And the fact that there’s no magic ‘cure’ can leave you feeling overwhelmed.
That’s why we decided to write The Ultimate PCOS Handbook. We’ve both got PCOS ourselves, and have found that there’s nothing like fighting back to help you feel better about yourself, better about life, and better physically as your self-help strategies help your symptoms recede.
If you’ve ever sought medical help, and been made to feel you’re fussing about nothing, or that you should just take the Pill, go away and come back for more drug treatment when you want to get pregnant, this book’s for you.
If you’ve ever tried to explain your condition to a friend, relative or co-worker, and they’ve looked at you like you’re from another planet, then read on!
If you’ve ever found yourself thinking ‘Why me? Haven’t I got enough to cope with?’ or you’ve felt frustrated that this feeling of powerlessness is sapping your confidence and eating away at your joie de vivre, it’s time to say ‘No’ to PCOS ruling your life.
This ultimate handbook shows you all the things you can do to take control of your symptoms, your health and your happiness, starting from today. Whether it’s boosting your understanding of your condition so you can talk to your medical practitioner with more confidence, discovering the best foods to eat to help you lose weight or boost fertility, or working out how a lifestyle and exercise plan can enhance your medication, you’ll find it all here, plus inspiring thoughts and stories from other women who have taken charge of their PCOS and transformed their lives as a result.
We’ve both used the information and ideas in this book to get our health and our lives back on track (read our success stories on page 353), and we hope it helps you to choose a positive, happier, healthier future, and create a sense of yourself, not as a woman ruled or defined by her PCOS, but as a woman living a fulfilling life who just happens to deal with PCOS along with the bills, the laundry, the kids, the job, the whole kit and kaboodle.
We hope you find taking charge of your PCOS using this handbook to be a satisfying, revitalizing experience. Good luck! And don’t forget to pass on your success stories to other women with PCOS too.
Colette and Theresa
January 2006
CHAPTER 1 WHAT EXACTLY IS PCOS?
Polycystic ovary syndrome (PCOS) is a metabolic disorder that disrupts your hormones, typically giving you higher-than-normal levels of certain sex hormones and insulin, which can trigger symptoms such as irregular (or no) periods, acne, excess hair and weight gain. You may also have a number of cysts on your ovaries – these show up as dark blobs on an ultrasound scan. These are in fact empty egg follicles in a state of ‘suspended animation’, waiting for the right balance of sex hormones to come along and activate them. About one in 10 women in the UK, US and Australia develops the condition.1
Most women with PCOS start to notice symptoms in their late teens or twenties. There’s a range of symptoms,2 but you’re likely to have one or more of the following:
absent, infrequent or irregular periods due to the imbalance of hormones
subfertility, as you need to ovulate to become pregnant and some women with PCOS don’t ovulate regularly or at all
acne which lasts longer than the normal teenage years – this happens if you produce too much testosterone
obesity or weight gain
insulin resistance: a higher-than-normal amount of insulin in your body, which creates an imbalance with other hormones and puts you at increased risk of Type 2 diabetes (by up to 40 per cent by age 40)
excess hair (hirsutism) – if you produce too much testosterone – which can develop in places such as the face, chest and tummy
alopecia (thinning hair) particularly at the top of your head and on your temples if you produce too much testosterone
Long-term health risks.3 Women with PCOS tend to have a higher-than-normal risk of developing diabetes and a high cholesterol level later in life. It also increases your risk of having a stroke and developing uterine cancer.
HOW TO GET A DIAGNOSIS
If you suspect that you’ve got PCOS, you’ll need to see your doctor. If your GP also suspects that you have PCOS, they may refer you to a hospital specialist in endocrinology (medicine relating to hormones) or a gynaecologist (a specialist in women’s reproductive