September is PCOS Awareness Month which was created to increase awareness and education about PCOS in the general population and healthcare professionals. The aim of PCOS Awareness Month is to help improve the lives of those affected by PCOS and help them to overcome their symptoms, as well as prevent/ reduce their risks of other chronic diseases.
PCOS is a genetic, hormone, metabolic and reproductive disorder and is the leading cause of female infertility. Some clinical features include reproductive issues (such as reduced frequency of ovulation) and irregular menstrual cycles, reduced fertility, polycystic ovaries on ultrasound and high levels of male hormones such as testosterone, which can cause unwanted facial or body hair growth and acne. It is also associated with metabolic features, diabetes and cardiovascular disease (risk factors including insulin resistance and abnormal cholesterol levels).
There are a lot of misconceptions out there so thought I’d bust some common myths related to PCOS:
Myth #1: PCOS is a rare condition
This is not true. It is estimated that around 8 to 13% of females are affected by this condition. It affects 1 in 6 women are affected in Australia. A study from 2018 reported the prevalence to be 12% among Australian women aged 16-29 years. It’s also important to note that there are many women who are potentially unaware of their condition and are yet to be correctly diagnosed.
Myth #2: you did something that caused PCOS.
This is not true. PCOS is caused by genetics and several other factors. Women whose mothers and sisters have PCOS are more likely to be affected by this condition. While it can often run in families, it is also related to hormone levels (including insulin production). We don’t know why some women develop it and others don’t. Any woman can be affected by the condition. You’re not at any kind of fault if you are diagnosed with PCOS.
Myth #3: you have PCOS if your menstrual cycle is irregular
This is not true. No single symptom is enough to provide you with a diagnosis of PCOS. PCOS stands for Polycystic ovary syndrome. The definition of a ‘syndrome’ means that a group of symptoms which consistently occur together, or it is a condition that is characterised by a set of associated symptoms. As PCOS is a syndrome, one sign or symptom (such as irregular periods) is not enough for a diagnosis. To meet the diagnostic criteria of PCOS, women need to have two of the following three criteria:
- irregular periods
- signs of increased levels of androgens (hormones that give “male” characteristics) such as excess hair growth, acne or hair loss
- enlarged ovaries with lots of small follicles containing immature eggs (known as polycystic ovaries)
Research with clinicians has shown that many women are self-diagnosing or incorrectly diagnosing their PCOS based on irregular cycles alone or on an ultrasound showing polycystic ovaries. It’s important to note that not all women with polycystic ovaries will have PCOS. The facial and body hair of women can vary based on different ethnicities. Acne is another symptom that is often linked with PCOS; however, research shows that acne is common in women (~25%) and prevalent across different age groups.
Additionally, there may be other factors/ conditions that can mimic symptoms of PCOS. Some of these include stress, hormonal contraceptives (such as the pill), obesity, thyroid issues (which can affect metabolism), over-exercising, disordered eating and hypothalamic amenorrhea (when periods stop because of stress, excessive weight loss or physical exercise).
Myth #4: you cannot fall pregnant if you have PCOS
This is not true. All women produce small amounts of androgens (male hormones), but those with PCOS have more androgens than normal. This is what prevents ovulation and makes it difficult to have regular menstrual cycles. However, a number of medications can be used stimulate ovulation if women have trouble conceiving naturally.
Myth #5: you should be following a gluten/ soy/ dairy free diet if you have PCOS
This is not true. While a lot of women with PCOS cut out gluten, dairy, soy or sugar out completely, these restrictions are often not necessary (unless they have Coeliac disease, lactose intolerance or other intolerances). Cutting out these food groups will compromise your nutrient intakes such as B vitamins, fibre and calcium. Always speak to your dietitian for advice that’s right for you and tailored to your lifestyle.
Myth #6: PCOS causes you to gain weight or prevents weight loss
This is not true. PCOS can affect women of all shapes and sizes. Many women with PCOS report difficulty losing weight but studies have shown that diet and weight management interventions have resulted in a similar amount of weight loss in women with and without PCOS (Kataoka et al 2017). However, what we do know is that being overweight worsens all clinical features of PCOS. This is why lifestyle modifications (diet and exercise) are really important and is the first line management for PCOS.
Myth #7: All women with PCOS are at risk of ‘metabolic complications’
PCOS is associated with an increased risk of developing insulin resistance (this is when the body doesn’t respond properly to the hormone insulin which is released by our pancreas), type 2 diabetes and metabolic syndrome (a collection of factors such as high blood pressure and poor cholesterol levels).
It is also associated with metabolic features, with risk factors for diabetes and cardiovascular disease including high levels of insulin or insulin resistance and abnormal cholesterol levels. A recent study suggests similar cardiovascular health and 10-year CVD risk in women with and without PCOS.
As a result, some women with PCOS have reported anxiety about their long-term health. However, it’s important to note that the potential consequences are not the same for all women who are diagnosed with PCOS. For those women who have been diagnosed due to irregular menstrual cycles and polycystic ovaries (and do not show any signs of excess androgen), they don’t have the same metabolic risks as women with excess androgen.
Women with PCOS are often wrongly labelled as high risk which can cause unnecessary anxiety. This can affect their quality of life and can worsen anxiety and depression.
Did any of these myths surprise you? Do you have any others to share?