Polycystic ovary syndrome, or PCOS, is the most common hormonal condition in women, affecting some 12-18% of women of reproductive age. This figure is even higher in vulnerable groups, such as indigenous women, who have rates of PCOS at closer to 21%.
PCOS is often a complex condition to diagnose because there are a number of symptoms that indicate the syndrome, but sometimes only two or three are present; and occasionally more symptoms are evident but another condition is causing them. It affects different women in different ways. The term poly-cystic ovaries may even be slightly misleading because not all women with PCOS have multiple cysts on their ovaries. Conversely, not all women with multiple cysts on their ovaries have PCOS. Confusing? Perhaps it’s the use of the word cysts: usually they are not cysts at all, but partially-formed follicles that contain an egg.
Signs and symptoms
The symptoms experienced by women with PCOS are largely due to hormonal changes caused by the condition, with the main one being hyperandrogenism. Androgens are the ‘male’ hormones, although they are still naturally present in females – just at much lower levels. Androgens are produced in the adrenal glands and ovaries in women (as opposed to the testes), and serve several important regulatory functions. Testosterone is the main hormone. When the amounts are increased, however, ovulation and menstruation are affected, as well as other non-reproductive body parts.
Symptoms that can suggest PCOS is present may include:
- Irregular menstrual cycles – more or less frequent
- Particularly heavy or light periods
- Amenorrhoea (missing periods) – some women with PCOS do not menstruate for months or years
- Excessive hair growth, or hair growth on neck, chest and face (hirsutism)
- Adult acne
- Darkened skin patches
- Scalp hair loss
- Difficulty falling pregnant due to infrequent or absent ovulation
- Mood disorders that include anxiety or depression
- Obesity or difficulty managing weight
- Sleep apnoea
The severity of these symptoms can vary dramatically, ranging from mild to severe.
Although some women with PCOS have normal, regular periods, the elevated levels of androgens, as well as the hormone insulin which can also be increased, can alter the monthly cycle of ovulation (the point at which an egg is released) and in turn affect menstruation. A woman with PCOS may have irregular periods, or no periods at all. Most women experience a cycle between 21 and 35 days (with 28 being the average), but cycles outside of this “normal” range are considered irregular. If menstrual cycles lengthen, ovulation can stop altogether or may occur only occasionally. Menstruation can be notably heavy for women with PCOS, but conversely, it may be particularly light. These seemingly contradictory symptoms are part of why identifying the condition can be troublesome.
Hirsutism (excess hair growth)
Hirsutism describes the excess of hair visible on the face and body caused by the high levels of androgens that stimulate the hair follicles. This excess hair is thicker and darker than normal, and occurs in areas where it’s more typical for men to grow hair, such as the cheeks, chin, upper lip, chest, lower abdomen and thighs. It affects around 60% of women with PCOS. Some women with PCOS are more predisposed to to hirsutism, particularly those with ethnic backgrounds that are prone to darker body hair.
Alopecia (scalp hair loss)
The increased androgen levels in women with PCOS may cause hair loss, receding along the hair line or thinning on the top of the scalp. The changes may appear similar to male pattern baldness.
Women with PCOS may experience adult acne. The androgens circulating through the system can increase the size of the glands in the skin that produce oil, leading to an increased likelihood of breakouts. Acne and pimples are common in adolescence and young adulthood, but women with PCOS tend to experience it for longer, and with a higher degree of severity.
Androgens and insulin can affect the female reproductive organs once they are elevated above normal levels. They impact on or even prevent ovulation (the release of a mature egg from the ovary) and affect the menstrual cycle. The problems with ovulation are what make it difficult for many women with PCOS to fall pregnant naturally, and some also have a greater risk of miscarriage. This is not to say that women with PCOS are infertile, or even that they require medical intervention in order to conceive. Many women with PCOS conceive naturally and have smooth pregnancies. Others do require assistance from a fertility specialist. Women with PCOS who are overweight and trying to conceive can usually improve their odds by engaging in regular exercise and ensuring their nutritional intake is balanced. More tailored information can be sought from a GP or a specialist clinician.
What causes PCOS in the first place?
The exact cause of PCOS is unknown, but some correlations are evident. A family history, insulin resistance and lifestyle and environmental factors seem to play a role, but this is not obvious in all cases.
There are strong genetic factors at play, with immediate female relatives of women with PCOS (daughters of sisters) having up to a 50% of developing PCOS. Type 2 diabetes is also more common in families of women with PCOS, though the mechanisms here are also as yet unknown. It is likely that the relationship between the two conditions is complex, multi-factorial and involves several co-dependent genes.
You may know of insulin as the hormone that regulates your blood glucose levels. Insulin is released by the pancreas in order to help your cells take up the glucose from your food in order to convert it into energy. If you are insulin resistant, this process is impaired, and glucose can remain in the blood stream at higher than normal levels. This prompts the pancreas to produce even more insulin, which in turn can increase the production of androgens, such as testosterone, in the ovaries. It is this hormone production that contributes to the hirsutism and acne, as well as the fertility issues. Insulin resistance is present in around 80% of women with PCOS, leading to an increased risk of type 2 diabetes and all the associated risk that go along with that, including cardiovascular disease and peripheral neuropathy.
Although insulin resistance is normally caused by lifestyle factors like being overweight, as well as a genetic predisposition, women with PCOS are more likely to have a type of insulin resistance that is caused by genetic factors that are not associated with being overweight. In some women with PCOS, a combination of factors is responsible. It is worth noting that many women with PCOS report an improvement in their symptoms when their weight is maintained at a healthy level, while their symptoms worsen when there is an increase in weight. This means that weight management is likely to be an important part of self-care and overall treatment of PCOS.
Mood changes and mental health
Women with PCOS should know that they are at a relatively high risk of developing depression and anxiety. Around 29% of women with PCOS have depression compared with approximately 7% of women in the general population. An even greater number of women with PCOS will experience anxiety – a staggering 57%, contrasted with 18% of women generally. The exact reasons for this are not yet known. There may be hormonal factors, but the research in this area is ongoing, and we cannot yet say how and why hormones impact on the mental health of women with PCOS.
The more obvious impact is that of the symptoms themselves – coping with excessive body hair, fertility issues, acne, weight management problems and all the other types of discomfort that can be experienced by women with PCOS can be burdensome and stressful. Not only is the woman’s body image affected, but her sense of sexuality and femininity can also be affected. These all have the potential to negatively affect the mental health and wellbeing of the sufferer. It is important to seek appropriate care for depression and anxiety. A GP or appropriate specialist can assist with treatment or referral for these conditions.
Obtaining a diagnosis
If you think you may have PCOS, or you are experiencing uncomfortable or concerning symptoms that involve menstruation or sexuality, you need to see your doctor. There are a few layers to diagnosis, beginning with a complete family and medical history. Having specific descriptions of your symptoms will be very useful. You will likely be referred for an ultrasound of your reproductive organs – this will show if any “cysts” or lesions are present. In the meantime, blood tests will show what hormones are present in your blood stream, and in what concentrations. These tests can also help eliminate the possibility of other conditions with similar symptoms, such as thyroid problems or endometriosis.
After diagnosis – what now?
The management and treatment of PCOS depends on the symptoms, and the severity of those symptoms. A healthy diet and regular exercise can benefit all of us, but can have particularly noticeable effects on women with PCOS. For some, this approach will be insufficient, and medications and other interventions will be beneficial. Important lifestyle changes you can make immediately include developing an understanding how PCOS affects the body, and approaching health with a balanced attitude to diet and exercise, including a sensible nutritional intake and regular exercise.
Weight loss, where appropriate, may help with the management of some PCOS symptoms, as well as reducing the risk of developing type 2 diabetes and cardiovascular disease. Even a weight reduction of 5-10% in overweight women with PCOS can have far-reaching effects, including enhanced mood, improved fertility and more regular menstrual cycles. Exercise is also linked to increased energy levels, boosted self-confidence and decreased anxiety and depression levels.
The available medical treatments for PCOS include the following, though they are not suited to all symptomatic women:
- The oral contraceptive pill
- Insulin controlling drugs such as Metformin
- Hormone controlling drugs (gonadotropins)
- Testosterone lowering drugs
- Weight-loss medications
- Antidepressant or anti-anxiety medications
For women PCOS who are attempting to conceive naturally, it may help to consult with a fertility specialist prior to trying. This way the specialist can impart what is a normal or unrealistic expectation, what treatments or supplements may help the chances of conceiving, and at what point should further help be sought.
The final word
Living with PCOS needn’t be a nightmare, or indeed even anything more than an unpleasantness. Good help is widely available these days, and most doctors are well-versed in the diagnosis, management and treatment of presenting symptoms. You never know when specialist treatments will be required though, so it’s best to be fully covered with an appropriate health cover plan. If you don’t currently have cover, compare health insurance providers right away so you’ll be eligible for the right rebates if and when the time comes. Remember, PCOS is a highly individualised syndrome, and your story will be different from the next woman’s. That means your medical story will be yours alone, and the peace of mind that comes with being covered cannot be overstated.