A doctor explains what you need to know about polycystic ovarian syndrome.

I’m going to blow your mind – polycystic ovarian syndrome (PCOS) has little to do with the ovaries.

PCOS is a common, but often misunderstood condition. 12–21% of women of reproductive age will suffer from it and despite the small acronym the diagnosis has many implications.

The syndrome, despite the name, is more about the body’s metabolism and how it deals with insulin as opposed to the ovaries. Whilst most people’s minds jump to overweight women with excessive hair growth when they think of PCOS, take a look at Victoria Beckham – a very slender woman who has struggled with the condition. There may be friends or family members who have the condition that you are not aware of – remember how they said to never judge a book by its cover?

Here are the main things you should know.

The disorder has 3 characteristic features and you only need 2 to be diagnosed. Irregularities of menstrual cycle, high levels of testosterone (with features like excessive hair growth or elevated levels on a blood test) and characteristic features of the ovaries on ultrasound are the 3 criteria. The ovaries are not essential to diagnosis, so everyone harping on about them can be very misleading! You can be diagnosed with the condition and have perfectly normal ovaries on an ultrasound.

The ‘cysts’ everyone refers to are actually follicles in the ovary. A follicle is where the eggs are made and when a woman ovulates there is one lucky follicle (usually!) that gets to release an egg. People often ask me “what will happen to the cysts? Do they get surgically removed or burst?” The image that many of my patients have in their mind of a huge ovary with pimples all over it isn’t necessarily correct – and the follicles don’t need removal.

Insulin resistance is the main issue in PCOS. This means that the body needs more insulin to keep the blood sugar levels normal. It is the high levels of insulin that cause a lot of the problems in PCOS. It is the reason why patients have a much higher risk of both type 2 and gestational diabetes. The higher insulin levels also stimulate more testosterone production which can cause the excessive hair growth and acne that many PCOS patients struggle with. Ongoing monitoring for diabetes in patients every 2-5 years is recommended and for women with PCOS who are pregnant, we screen for gestational diabetes earlier on.

Before we can diagnose you with PCOS we need to do blood tests to exclude other conditions like thyroid disease. If you meet the criteria for diagnosis (for instance you have excessive hair growth on the lip or tummy and long menstrual cycles) you don’t always need an ultrasound. Remember you only need 2 out of the 3 criteria to be diagnosed. Having said that, most of my patients who meet the criteria still want the ultrasound for peace of mind and to know exactly what they are dealing with – and that’s fine too.

Patients with PCOS can have problems with fertility, with irregular ovulation and menstrual cycles some patients need assistance to conceive or take longer. I see lots of patients panic about this – please know that many with PCOS go on to have successful pregnancies with no assistance. For others, some help may be needed and early referral to a fertility specialist can be arranged.

Patients with PCOS are at a higher risk of conditions such as depression and anxiety. Mental health is an aspect to PCOS that often gets ignored. Struggling with weight, excess hair and concerns about fertility can be stressful and talking to someone like your GP can help.

Women with increased time between menstrual cycles have an increased risk of endometrial cancer, as there is too much oestrogen exposure to the lining of the uterus called the endometrium. Some women with PCOS can have months and months between periods as opposed to regular monthly bleeds. Controlling the menstrual cycle with some form of contraception (there are many options!) is key to protecting against endometrial cancer because it provides the uterine lining with some progesterone and not just constant oestrogen.

For women who are overweight when diagnosed, losing 5 to 10% of body weight can have wonderful benefits for regulating menstrual cycle, improving fertility and reducing diabetes risk. So, the minute we diagnose someone a lifestyle review is high on the agenda.

Of course, for some weight loss can be very hard to achieve (or not indicated if their weight is already in the healthy range) and that is when other options can be used to manage the condition. Given the main issue is insulin resistance (and high levels of insulin) lifestyle factors like regular exercise and a good diet are key to managing the condition. For some women using type 2 diabetes medications such as Metformin can also help. Given that women with PCOS are at increased risk of type 2 diabetes it is crucial that women get ongoing monitoring of their cholesterol and sugars – it is this aspect to the condition that many women are not aware of!

I am currently managing 11 women with this condition as a GP and each woman has different concerns about her PCOS. For one patient the excessive hair growth affects her confidence significantly. For another the thought of having issues conceiving in the future causes her major anxiety. I work with all my patients very closely to achieve lifestyle shifts that can help – we work towards regular exercise, a good diet and aim for a weight in the healthy range and in some instances, we use medication as well. Every woman with PCOS has a different journey.

When you hear the acronym PCOS from now on think insulin resistance, diabetes risk and mental health issues– not such a small acronym after all is it?

A version of this was initially published by Dr Preeya Alexander on Women’s Fitness online.