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Polycystic Ovary Syndrome (PCOS): It's not just a reproductive disorder - Theresa Hickey I have been a research scientist for Prof. Robert Norman, head of the Reproductive Medicine Unit, Adelaide University, for the past 6 years. PCOS is his special interest and all of my research has focused on this topic. Two years ago I enrolled to do a PhD in medical science with Prof. Norman and am working on a project that investigates androgen activity at the genetic level in the human ovary. Prior to my work with Prof. Norman, I worked on research projects that investigated hormone activity in cervical and prostate cancer. For the past 12 years I have also taught human anatomy and physiology to students studying to be massage therapists. I am 41 years old and the mother of 3 children.

PCOS is a disorder of the endocrine system, a network of glands throughout the body that produce potent chemical messengers called hormones. These hormones control many aspects of normal body functioning and imbalances in their activity can result in mild to severe health consequences. In PCOS, the hormone imbalances primarily affect female reproductive function and represent the major cause of female-related infertility. This is quite a common problem, affecting 5-10% of women regardless of ethnic origin. In the past, treatment of PCOS was mainly confined to women that sought assistance in becoming pregnant or to those that wanted relief from cosmetic conditions (excess hair and acne) that often accompany the disorder. However, research over the past decade has revealed that there are other consequences of PCOS that impose a major health concern. These include significantly higher risks of obesity, diabetes, heart disease, and certain cancers. For this reason, PCOS is receiving more attention as the medical community is being called upon to become more aware of the disorder. Many of the conditions associated with PCOS can be improved by early intervention, which include lifestyle changes and/or medication. So whether infertility is a problem or not, women with PCOS are encouraged to seek medical advice.

What causes PCOS?

In most cases of PCOS, the ovaries produce an excess of "male" hormones called androgens. Androgens (like testosterone) are considered "male" because men produce much larger quantities of them than women do, and it is the activity of these hormones that largely gives men their unique characteristics. However, women also produce androgens in much smaller quantities, and these androgens are essential to female health. Women with PCOS produce larger quantities of androgens than other women (a condition called hyperandrogenaemia), but these levels are not nearly as high as those found in men. Also, it is possible to acquire PCOS by having an increased sensitivity to normal levels of androgen. In the ovary, an egg develops inside of a structure called a follicle. During a menstrual cycle, many follicles begin to grow, but only one releases its egg (ovulation) at mid-cycle. Those that do not ovulate normally die. Androgens are necessary for follicle growth, but too much androgen causes too many follicles to grow per cycle. In PCOS, these follicles often do not ovulate (anovulation) and resist the normal death process, leading to accumulation of numerous ovarian "cysts".

While androgen activity appears to be the primary dysfunction in PCOS it is now known that women with this disorder can also have irregular insulin and/or LH (luteinizing hormone) activity. Insulin comes from the pancreas and is involved in regulating the body's energy supply and use. LH comes from the pituitary gland and is involved in regulating the female menstrual cycle. Excess production or sensitivity of either of these hormones can result in increased androgen production by the ovaries. Being overweight can cause insulin levels to rise and may intensify the symptoms of PCOS. However, not all women who are overweight develop the disorder.

What are the symptoms of PCOS?

It is important to note that PCOS has a high degree of variability. The following symptoms are associated with this disorder but not all are seen in every woman.
Hirsutism (excessive hair growth on the body, often in a "male-like" pattern)
Hair loss on the scalp (usually a thinning that first appears on the crown of the head)
Acne
Polycystic ovaries on ultrasound scan (the disorder acquired its name from this characteristic)

These first four are clinical signs of excess androgen (hyperandrogenaemia). Excess androgen can also be determined by measuring its level in the blood.
Menstrual irregularity (especially cycles that last >35 days) and anovulation (failure of the ovary to ovulate an egg)
Infertility or reduced fertility
Weight disorders including obesity (the obesity in PCOS often has a characteristic form due to the influence of androgens. Instead of a "pear" shape (smaller waist than hips) obese women with PCOS have an "apple" shape (large accumulation of abdominal fat).

Because of this variation, PCOS poses a particular challenge to researchers and there is continued debate over which symptoms should be considered most representative of the disorder. Currently hyperandrogenaemia and anovulation are considered the primary features for diagnosis. Abnormal menstrual periods and decreased fertility are usually signs of anovulation. Differences in ethnicity clearly affect symptom expression in PCOS. For instance, hirsutism does not seem to affect many Asian women.

When do symptoms of PCOS appear?

Most often, symptoms first appear around puberty, although some women do not develop symptoms until their early to mid-20's or occasionally after having a baby. Some research indicates that women with PCOS start menstruating at an early age.

Is PCOS a genetic condition?

PCOS and variations of its symptoms frequently run in families, indicating that genes are somehow involved in the process. As with most complex ailments, genes cannot be considered the sole cause; one inherits a genetic predisposition to the condition. Androgen excess, insulin dysfunction, and obesity are all heritable features. In PCOS, lifestyle factors (especially diet and exercise) appear to have a large influence on the appearance and severity of symptoms.

Where can I get more information?

As awareness of PCOS has increased, many information networks and support groups have become available, mainly over the Internet. The first of these, The Polycystic Ovarian Support Association, can be accessed at http://www.pcosupport.org. This website is an excellent resource for anyone interested in PCOS and provides background information, discussion forums, current research, treatment options, and links to worldwide support groups. There is a sister organisation to this association called Polycystic Ovarian Syndrome Association of Australia http://www.possa.surak.com.au which is probably the closest support group for South Asian women. This website also has a wealth of information and electronic links. For those who would prefer literature on the subject, I recommend the recently published Polycystic Ovary Syndrome: The Hidden Epidemic by Samuel S. Thatcher M.D., Ph.D. (published in 2000 by Perspectives Press, http://www.perspectivespress.com. This book is very comprehensive and is designed for a general readership.

If consulting a physician, be aware that many general practitioners are still not aware of PCOS and its wider implications. It is important to contact a doctor with some knowledge and experience of the disorder. The websites mentioned above offer advice on finding and consulting an appropriate medical practitioner.

Look out for a few shorter supplements in future SAWF webzine issues, each focussing on a separate PCOS issue.

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