"Why have I never heard of PCOS?" Many women ask this question when they are diagnosed, or are asked it when they try and explain to someone what's been making them feel under the weather. It is amazing that a condition estimated by the medical profession to affect up to one in 10 women can be so unheard of.

The Hush-Hush Factor
The main problem for women with PCO/S, aside from the ill-health, is that their condition is so little known or talked about that it leaves them feeling isolated and powerless. Few women know about PCOS until they are diagnosed with it. Everyone who has felt their chest go suddenly tight and wheezy might wonder whether they have developed asthma; most women who feel a burning sensation when they pee would suspect that perhaps they have cystitis. But many women who have any number of symptoms associated with PCOS might not be able to guess at it nor ask their doctor to rule it out, because it's still a hush-hush condition.

PCOS or PMS?
It might seem surprising to have to look back as far as the 1930s, but a brief dip into history can tell us a lot. In the 1930s -- when PCOS was first "discovered" and named by two doctors called Stein and Leventhal -- only women who were very overweight, had no periods at all and also showed a lot of facial or body hair were classed as having PCOS. Very little research was carried out for the following 60 years, so many women dealing with the day-to-day problems that PCOS can bring -- in whatever shape, form or severity -- would not have been classified as having the condition.

Even now, the three symptoms mentioned above -- overweight, no periods at all and an overgrowth of facial or body hair -- are considered to be the "classic" signs of PCOS that healthcare practitioners look out for. Yet there is a whole menu of symptoms associated with PCOS, including the three mentioned above but also covering such experiences as fatigue, acne, joint pain, hair loss (alopecia), tender breasts, bloating, mood swings, difficulty in conceiving and depression. A woman with PCOS could display any single one or any combination of these symptoms, which can make it very difficult to diagnose.

Helen, 28, for example, only ever had acne and depression, so was given antibiotics, told she was stressed out and then referred to a counselor for her depression:

The way my symptoms were looked at separately by my doctor meant that I never connected them together either. It was my mum who said that she sometimes got depressed before a period -- that got me wondering. I realized I'd always had a really long cycle of around 38 days, but had never told my doctor because it had always been like that. When I did tell him he started to think around the acne, blue moods and irregular periods, and diagnosed PCOS.

On the other hand, Amber, now 35, never had any symptoms to speak of but just found it hard to get pregnant:

We tried for four years before we managed to have Thomas with IVF treatment. It was only during a scan during the treatment that someone pointed out that I have PCOS. Had I known about it four years before, we could have saved a lot of heartache.

One in five women who has ultrasound scans during gynecological examinations show up polycystic ovaries.¹ Of those who are found to have polycystic ovaries on ultrasound scan, more than 80 percent do in fact have one or more of the classic symptoms of PCOS, although they have not complained of these symptoms.² These women considered themselves normal and had not complained before the ultrasound examination questionnaire.

PCOS is polycystic ovary syndrome, which is the name given to the condition which includes having polycystic ovaries and symptoms associated with the syndrome -- you can have PCO without having PCOS.

Fact: Periods Are a Problem
It is also worth noting that many women are brought up to think that periods are a "curse" and bring pain, acne and bad moods with them as a matter of course. If you are brought up to expect pain and misery as normal, you won't go to see a doctor to check if there's anything wrong if you experience them. Women who have scanty, light or even non-existent periods often feel they are getting off lightly and shouldn't complain. Many women with PCOS who have this problem have in fact been told that they are "lucky" by doctors.

If more women felt they had a right to expect more regular -- in both senses of the word -- periods, more women would go to the doctor and insist that they be checked out for gynecological problems such as PCOS.

Stressed Out?
There is a danger that because stress is known to have such wide-ranging effects in people -- from heart attacks and stomach ulcers to fatigue and insomnia -- it can almost be blamed for anything, including the sorts of symptoms associated with PCO/S. Acne, weight gain, fatigue, hair loss, even irregular periods can all so easily be attributed to stress that the comfort of self-diagnosing ourselves and recommending to ourselves that we take it easier can leave the PCOS stone unturned.

Too Guilty to Pay Attention to Ourselves?
It is still a commonly held belief that women are supposed to sacrifice everything to help others, because women are supposed to have the 'mothering instinct'. This can leave women who worry about their own health feeling guilty. How many of us brush aside worries because we feel we don't want to cause a fuss?

An Embarrassing Topic
PCOS can be hard to talk about because it deals with embarrassing and emotionally-charged topics such as excess body hair, adult acne, periods and fertility issues. And let's face it, talking to friends about these things can be hard enough, never mind a doctor, especially when you are feeling low. But talking about these sorts of problems is the first step to getting the right kind of help.

The Fear That Comes With Change
Feelings of bewilderment, and shame about the changes that can happen in a woman's body and emotional life if she has PCOS, can be very frightening.

These mood swings took over my life. I would be really snappy one minute, weepy the next and then laugh at things that weren't really funny at all. I felt out of control. Emma, 24

I was disgusted by how my body started to look. I sprouted hair around my nipples, navel and on my chin. I refused to look in the mirror unless I was shaving it off. I was too ashamed to see a beautician. I thought I was turning into a man because of the hair and because my waist disappeared under the extra pounds that piled on. I was a nervous wreck by the time I was desperate enough to see a doctor. Sheila, 36

Doctor, Doctor
If you feel as demoralized, upset and frightened as Emma and Sheila did by the time you get to the doctor, it can be easy to let them tell you there's nothing really wrong, that many women have body hair, that many women feel tired, moody and put on weight as they get older. This is partly because when you're feeling down and at a low ebb anyway it's very hard to stand up for yourself against a trained professional who feels there is little worth investigating. We are also taught from an early age to trust what doctors tell us -- but bear in mind that PCOS is a condition still very much in the shadows, so it could be simply that your doctor doesn't know very much about it. (If you think this is the case, ask them directly if they think it could be PCOS.) It can also be easy to accept a pat answer because, despite knowing deep down that there is something wrong, you want to hear that there is not.

It's Good to Talk
In the end it's down to us to take responsibility for our own health when we can. If we talk to our friends, doctors, families and other women with PCOS we can help to shed light on what it is and help to determine the right way for it to be treated.

The more information we share about PCOS and our feelings about dealing with it, the less it will remain ignored and under-recognized.