What is PCOS?
Polycystic ovary syndrome or PCOS is a reproductive condition that is thought to affect 5-10% of women and it is estimated that it impacts approximately 116 million women worldwide1. It can be a complex condition that can feel difficult to understand and often there is little support offered to those that receive a diagnosis, leading to feelings of anxiety, confusion and self-blame.
This is due to PCOS being a chronically underfunded, under diagnosed condition, meaning there are many women with PCOS who are unaware and those that are diagnosed, often are unsure how to support themselves with this condition.
Headlines for PCOS
- PCOS is an endocrine (hormonal) condition, that also has reproductive and metabolic involvement.
- PCOS can’t be cured, but it can be well managed with lifestyle changes and medication.
What are the symptoms of PCOS?
PCOS is a collection of symptoms and is classed as a syndrome, rather than a disease. Often, but not always, symptoms begin in puberty. Symptoms can vary and some have many symptoms where some are asymptomatic (have no symptoms), so the experience of PCOS can vary wildly from person to person. This may be part of why diagnosis can be complicated and lengthy, with many reporting it takes over two years to get a diagnosis2
There are some common symptoms that are reported, these include:
High body weight/difficulty losing weight
Many PCOS sufferers find that they have weight gain and struggle to lose that weight and this is the most commonly mentioned struggle2, and there are reason why it may be harder to lose weight with PCOS and the reasons for weight gain can be linked to the condition itself, or sometimes due to the disordered eating behaviours that are common in PCOS sufferers. Not everyone with PCOS will be living with overweight or obesity.
Disordered eating/body image issues/eating disorders
Those with PCOS have higher scores of binge eating, dietary restraint and body shape concerns than those without PCOS3. This is likely linked to the fact that so often the only advice women get when diagnosed with PCOS is lose weight, but they are not supported to do this in a safe and effective way and feel frustration, blame and failure when they are unable to achieve this, leading to more disordered eating behaviours and body image concerns.
Depression, Anxiety and mood changes
The latest PCOS guidelines have noted that screening of anxiety and depression in those with PCOS should form part of the management of the condition. The prevalence of these mental health concerns is higher in women with PCOS than those without4 and this may be part of the reason why we see an increase in disordered eating behaviours, although the reasons will be multi factorial.
This does not affect all with PCOS, but it seems that insulin resistance is a key driver of PCOS. If you think of insulin as a key that opens the body’s cells to allow glucose in for energy. When our body becomes resistant to insulin, it is like the key doesn’t fit the lock properly and so more glucose stays in the blood over time, which stimulates the body to make more insulin to try and bring the sugar level down. This increase in insulin may cause the ovaries to produce more testosterone and testosterone can then cause many of the symptoms of PCOS such as changes to ovulation, hair and skin and an increased risk of developing type two diabetes over time.
Irregular periods and ovulation
Irregular or complete absence of periods is a common symptom of PCOS. Changes to ovulation will impact on fertility and you may have regular periods without ovulation.
Excessive hair growth (Hirsutism)
This is linked to increased testosterone in the body and can lead to dark or thick growth of hair, commonly on the face, chest and back.
Thinning of the hair (alopecia)
Unfortunately, increased testosterone can also cause hair thinning by switching off the hair growth in scalp hair follicles.
Acne or oily Skin
Sebaceous and sweat gland function can increase with increased testosterone and this can cause congestion of pores, leading to acne and oily skin.
We often see elevated blood markers of inflammation in those with PCOS, but it is not clear whether PCOS causes inflammation or chronic inflammation may in some way lead to PCOS. This inflammation may contribute to insulin resistance and oxidative stress present in the ovary inhibits follicular maturation. Over time if not well managed then long-term consequences could be increased risk of diabetes and cardiovascular disease.
How is PCOS diagnosed?
The Rotterdam criteria is currently used to diagnose PCOS. You need to have at least two out the following three (so interestingly, you may not have ‘cysts’ on your ovaries and still have PCOS. This is why many say we should change the name of the syndrome!
- Ovarian dysfunction, or irregular cycles
- Higher androgen levels (e.g. testosterone) )
- Presence of polycystic ovaries on scan
The latest PCOS guidelines have made recommendations that we can now use a blood test for anti-mullerian hormone instead of an ultrasound scan in certain cases4.
Did you know: The cysts in PCOS are actually follicles, not cysts!
What causes PCOS?
The exact cause of PCOS is not fully understood. Its development is likely influenced by genetics and environment.
Is there a cure for PCOS?
No, there is no cure, it is a lifelong condition. PCOS can be very well managed through. Combination of lifestyle behaviours (nutrition, sleep, stress management, movement), supplements, medications can help to reduce symptoms, improve quality of life and reduce the risk of complications associated with PCOS such as insulin resistance and cardiovascular disease.
- Bulsara, J., Patel, P., Soni, A., & Acharya, S. (2021). A review: Brief insight into Polycystic Ovarian syndrome. Endocrine and Metabolic Science, 3, 100085.
- Gibson-Helm, M., Teede, H., Dunaif, A., & Dokras, A. (2017). Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. The Journal of Clinical Endocrinology & Metabolism, 102(2), 604-612.
- Başar Gökcen, B., Akdevelioğlu, Y., Canan, S., & Bozkurt, N. (2020). Increased risk of eating disorders in women with polycystic ovary syndrome: a case-control study. Gynecological Endocrinology, 36(9), 764-767.
- Helena Teede et al. International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome 2023. doi.org/10.26180/23625288.v1