What is Polycystic Ovarian Syndrome and what are the symptoms?

Polycystic ovary syndrome, or PCOS, is one of the most common reasons that women come to see an endocrinologist but it is also one of the most confusing. Although the syndrome is named for characteristic cysts less than 1cm in size just below the surface of the ovary, it is possible to be diagnosed with PCOS even if the ovaries look normal on a scan. Likewise, while up to 20% of women have such cysts on the ovaries but do not have the syndrome.

The diagnosis rests on individuals having two out of three of the following:

• Irregular or absent periods, suggesting that ovaries may not be releasing eggs regularly
• Symptoms or blood test findings of high levels of “male” hormones in the body, which may cause physical signs such as excess facial or body hair
• Visible cysts on the ovaries which are actually egg-containing follicles that have wrongly developed due to hormonal imbalance.

If these features are present it is also important to consider other reasons why these might be occurring as sometimes there is an alternative diagnosis that needs to be considered.

Although first described nearly 100 years ago, we still do not fully understand why the syndrome occurs although we do know that there can be, in part, a family tendency, which is also linked to a family tendency to insulin resistance, type 2 diabetes mellitus and the metabolic complications that can go along with these.

The symptoms can vary very widely between different people and while there is no single test that ‘proves’ or ‘disproves’ the diagnosis, a combination of the story, the physical findings and blood and scan tests can help to piece things together and to exclude other potential hormonal problems.

Not all women will experience all of the problems that can go along with PCOS but these include absent or irregular periods, extra growth of body hair particularly on the upper lip, chin, neck, chest, upper and lower abdomen, arm and inner thigh, thinning hair on the scalp, acne, skin tags or dark, velvety skin on the neck, armpits and groin. Some women find that they gain weight or find weight more difficult to lose and this may be linked to snoring at night or obstructive sleep apnoea. There may also be concerns about fertility. All of these symptoms can feel quite dispiriting and specific and targeted treatments may help, depending on which are the most troublesome.

In addition, and even if PCOS is not causing major symptoms, it is important to seek advice because the condition has long-term health implications including increased risks later in life of developing diabetes, heart disease and (rarely) endometrial cancer. Therefore, in addition to targeted treatments, this is an opportunity to consider lifestyle changes, around diet and activity to improve long-term health and wellbeing.

PCOS is a very common condition, affecting around 10% of women. While many women remain fairly untroubled by symptoms, others are affected either by some of the specific concerns listed or by worries about how their health might be impacted at different stages through their lifetime. This in turn can cause worry or anxiety. Getting help isn’t just about having a treatment for a particular symptom; it is also about getting a good understanding about the reasons for the symptoms and the pros and cons of any treatments suggested.

There is a lot of information ‘out there’ in books and on the internet. Some of this information is reliable and helpful, but some will be aimed at ‘selling’ you products and programmes that have not been shown to help or that do not have a good evidence base behind them. A good endocrinologist will be able to talk you through all of your options and give you the opportunity to ask all of your questions and to have them answered. PCOS is not a fully reversible diagnosis but there is a lot that can be done to mitigate your symptoms and improve your health, in partnership with your clinician.