Polycystic Ovary Syndrome, known as PCOS, impacts millions of people worldwide. But if you think you have PCOS, have been diagnosed or support a loved one diagnosed, you know that the condition can feel complex and confusing at times. This beginner’s guide to PCOS will help your understanding of the condition and direct you to resources to support syndrome management.
Top things to know about PCOS
- Polycystic ovary syndrome is a common endocrine condition
- Common symptoms include irregular periods, excessive hair growth, acne and oily skin and infertility
- PCOS cannot be cured but instead should be managed by lifestyle changes and medication
What is PCOS?
Polycystic Ovary Syndrome (PCOS) is a hormone disorder that affects approximately 116 million people worldwide. It is a chronically underfunded, underdiagnosed and undertreated condition. In fact, there are probably more people with PCOS who just don’t know it. As an endocrine (hormone) disorder, PCOS also has reproductive and metabolic consequences.
What are the symptoms?
PCOS is a syndrome which means it is a collection of symptoms. It is not a disease, per se, it is a label to describe how the ovaries are working. Symptoms tend to begin during puberty although this isn’t the case for everyone. Symptoms vary from person to person and some people may even be asymptomatic. PCOS looks different for everyone which may explain why it takes on average over two years to be diagnosed.
There may be many other symptoms that we don’t know are linked to PCOS. You are the expert of your own body so please remember that this list isn’t exhaustive.
Excessive Hair Growth
Excess testosterone can convert vellus hair (the thin, fine, colourless hair on our bodies) into terminal hair (thickened, darker hair). Excess, darker hair is especially seen on the stomach, face and legs.
Acne & Oily Skin
Testosterone also increases the action of sebaceous glands and sweat glands in the skin. This leads to congestion in the pores and inflammation. This can result in acne and oily skin.
It is common for people with PCOS to have irregular or a complete lack of periods.
Insulin resistance is a condition when the body’s tissues are resistant to the effects of insulin. They don’t allow glucose to enter the cells as we would expect. This can lead to increased levels of both insulin and glucose in the blood. Higher levels of insulin are linked to increased production of male-type hormones.
As many people with PCOS have an irregular cycle, determining the ovulation date can be challenging. This means that conception may take longer. In some cases, ovulation may not occur despite having regular periods.
Inflammation is crucial for our survival as a reaction to injury or infections. However, chronic inflammation is linked to a variety of diseases. Oxidative stress resulting from chronic inflammation may impact ovulation and may contribute to insulin resistance.
The cells of the body produce free radicals during normal metabolic processes plus antioxidants that neutralise these free radicals. Oxidative stress occurs when there is an increased number of free radicals compared to antioxidants in the body.
How is PCOS diagnosed?
In 2003 a consensus workshop in Rotterdam sponsored by the European Society of Human Reproduction and Embryology and the American Society for Reproductive Medicine came to the conclusion that if two of the following criteria were met then PCOS could be diagnosed.
Diagnosed via: a conversation with your doctor
If you have irregular periods (usually considered less than 6-8 per year) or the complete absence of periods then you may not be ovulating regularly.
Signs of High Testosterone
Diagnosed via: a blood test or a conversation with your doctor
Polycystic Ovarian Morphology
Diagnosed via: an ultrasound
Despite the syndrome being named after this criterium you don’t need to have polycystic ovaries to have PCOS. To be considered polycystic the ovaries must have 12 or more follicles on one or both ovaries. Follicles are cyst-like areas in the ovary where the eggs develop. The ‘cysts’ seen on ultrasounds.
What are the different types of PCOS?
Across both conventional and functional medicine, the syndrome is sorted into different types of PCOS.
In conventional medicine, these types are A, B, C and D and are dependent on the three diagnostic criteria: irregular periods/irregular ovulation, signs of high testosterone and polycystic ovarian morphology.
Alternatively, in functional medicine, the syndrome is again sorted into four types but by “root cause”. These four types are inflammatory, adrenal, and insulin-resistant PCOS.
What causes PCOS and who gets PCOS?
The risk of developing PCOS may be influenced by a combination of your genes and environmental aspects. Whilst the exact cause is unknown it does appear to run in families, however, there are no specific genes as of yet that have been identified to be associated with the condition. Nevertheless, if a relative such as your mother, sister or aunt has PCOS, your risk of developing the condition is higher.
How many people have PCOS?
Whilst it is difficult to know exactly how many people have PCOS worldwide, it is generally thought to affect between 4 and 20% of people with ovaries, however, currently, it is unknown for specific subpopulations based on geographical locations and race or ethnicity, with further research required.
What age does PCOS start?
If and when you develop PCOS will be different for every person. Between 5% and 10% of people between the age of 15 to 44, or during childbearing years, have PCOS. However, most people find out in their 20s and 30s, often driven by investigation when one has difficulty getting pregnant.
Although the above outlines when an individual is most likely to develop or find out they have PCOS it does not mean you may not develop the condition earlier, as PCOS can occur at any age after puberty.
How can I manage PCOS?
Although everyone’s symptoms are unique and individual management is key, there are some general management techniques that are generally beneficial for most people with PCOS.
Support From Your Doctor
Your doctor should be able to advise you of potential medication that could improve your symptoms. This may include insulin-sensitisers like Metformin, anti-androgens and hormonal birth control. They may also offer support to manage other complications of PCOS such as sleep apnoea, psychosexual issues, anxiety and depression.
Stress Management, Sleep & Rest
Stress hormones like cortisol can influence the HPO and HPA (hypothalamus-pituitary-adrenal) axis and exacerbate symptoms. Prioritising sleep and rest and aiming to manage your stress levels as much as possible may help with symptom management.
Gentle Nutrition & Supplementation
If you are feeling ready to bring in some gentle nutrition then consider eating regularly (every few hours). You can also consider building meals and snacks to contain all three macronutrients (carbohydrates, fats and protein). Our article on foods for PCOS is a great place to start to understand the impact of diet on PCOS, or our PCOS meal plans can help if you are looking for further support.
There are many supplements recommended for PCOS with varying levels of research behind them. Check out our article on the best supplements for PCOS to dive into the evidence behind inositol, omega-3, NAC, folic acid, magnesium and more.
Finding Intuitive Movement
Regular movement can help with the insulin resistance associated with PCOS plus provide plenty more physical and mental health benefits. Consider what movement feels good for you. You may want to ask yourself, what type of movement would you do if it had no impact on the way you looked? Our article on exercise for PCOS can support you to find movement you enjoy, or how about our article on yoga for PCOS?
Is there a cure for PCOS?
There is no cure for PCOS. The aim of treatment is to alleviate the associated symptoms, improve quality of life and prevent complications associated with it (such as insulin resistance).
What complications are associated with PCOS?
PCOS has reproductive and metabolic consequences which means it can impact periods and fertility. Having PCOS also increases the likelihood of developing impaired glucose tolerance, insulin resistance, hyperinsulinemia, type 2 diabetes, dyslipidemia, metabolic syndrome and subclinical cardiovascular disease.
Can I get pregnant if I have PCOS?
A common misconception when someone receives a diagnosis of PCOS is that you cannot get pregnant. This is understandable considering common symptoms of this condition are irregular or no menstrual periods. As the disorder is a combination of symptoms, it will display differently in everyone. Even if you are diagnosed and present with these symptoms, it does not mean you cannot get pregnant. In fact, the majority of individuals with PCOS are able to get pregnant following treatment. Our article on getting pregnant with PCOS may help with your fertility journey.
Founder and Editor | Registered Associate Nutritionist
Founder of Be The Collective LTD [The PCOS Collective & The Endo Collective] Alex Okell ANutr is a London-based reproductive health nutritionist with experience in research, private practice and digital media. She holds a Master’s degree in Nutrition from King’s College London and has co-authored papers with the University of Cambridge, King’s College London, The Food Foundation and the Food Standards Agency. Alex offers 1:1 PCOS support in our virtual PCOS clinic.