What is Polycystic Ovary Syndrome (PCOS?)

Polycystic Ovary Syndrome (PCOS) is the most common hormonal condition affecting women and people with ovaries changing how the ovaries function (1). Symptoms usually begin during adolescence or early adulthood (2), with an average 2 years until diagnosis. PCOS affects around 1 in 8–10 women. Think about that. That’s about the same prevalence as type 2 diabetes yet for some reason PCOS often flies under the radar. This is not some rare, obscure condition but a major health issue which impacts millions of people. In the UK, PCOS was estimated to cost the NHS £1.2 billion in 2019 due to increased healthcare use (3). Long-term women with PCOS are at increased risk of cardiovascular disease, type 2 diabetes, gestational diabetes, sleep apnea (4-6), showing just how complex the needs are for people with PCOS & how important lifestyle support is for women to apprpriately self-manage this life-long condition.

Yet it remains historically underfunded and under-recognised, even as prevalence continue to rise, particularly in younger populations (7).

Understanding the core of PCOS

There is no single blood test or scan that says, ‘You have PCOS’ it’s diagnosed when someone has at least two of three key features. That’s why it’s called a syndrome; it’s a collection of signs and symptoms, not just one thing.

So, here are the three key features are:

• Irregular or absent periods
  This is a huge sign that ovulation (the release of an egg) isn’t happening as it should, which can make it harder to get pregnant.

• High levels of androgens (often called “male” hormones)
  These hormones are naturally present in everyone, but higher levels are often present in PCOS

• Polycystic ovaries
  This might be referred to as a ‘string of pearls’ by the appearance on the scan with the many small, fluid-filled sacs (called follicles) that surround the ovary which is often enlarged. 

Common visible symptoms include weight gain, hair thinning on head but excess facial or body hair and acne, or oily skin. Commons invisible symptoms include absent or irregular periods.

More than ovaries: is the name PCOS misleading?

There is growing debate among researchers and clinicians about whether PCOS should be renamed (8). The term Polycystic Ovary Syndrome places emphasis on the ovaries and fertility but calling it a reproductive or fertility issue is a misunderstanding, it’s reach goes way, way beyond that. PCOS is not just a reproductive condition, the hormonal and metabolic issues affects the whole body. PCOS is a complex, multi-system condition. Although not symptoms per se, research shows elevated risks of anxiety, depression, eating disorders, body dissatisfaction and psychological distress for women with PCOS (9).

The name is also anatomically misleading because those “cysts” are not true cysts, but follicles, which are a normal part of the ovary that simply fail to mature properly in PCOS. This is one of the reasons why it can be more challenging to fall pregnant with PCOS - but not impossible!

On a personal level, I’ve experienced how this narrow framing can affect care. I’ve had my PCOS concerns dismissed after answering “No” to the question, “Are you trying to get pregnant?” This raises an important question: Does the name PCOS limit understanding for both clinicians and patients leading to delayed diagnosis? Or provision of support that focuses on fertility, rather than support for self-mangement and reduction of long-term health risks aka. support for overall health and wellbeing?

What do you think?

Should PCOS be renamed? And if so, what should it be called?

References

1. Palmer MJ, McCarthy OL, French RS. The Burden of Poor Reproductive Health in England: Results From a Cross-Sectional Survey. BJOG: An International Journal of Obstetrics & Gynaecology. 2025;132(13):2052-63.

2. NHS. Overview: Polycystic ovary syndrome 2022 [Available from: https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/.

3. Berni TR, Morgan CL, Rees DA. Rising Incidence, Health Resource Utilization, and Costs of Polycystic Ovary Syndrome in the United Kingdom. The Journal of Clinical Endocrinology & Metabolism. 2025;110(5):e1580-e9.

4. Hart R, Doherty DA. The Potential Implications of a PCOS Diagnosis on a Woman’s Long-Term Health Using Data Linkage. The Journal of Clinical Endocrinology & Metabolism. 2015;100(3):911-9.

5. Lorenz LB, Wild RA. Polycystic ovarian syndrome: an evidence-based approach to evaluation and management of diabetes and cardiovascular risks for today's clinician. Clin Obstet Gynecol. 2007;50(1):226-43.

6. Scicchitano P, Dentamaro I, Carbonara R, Bulzis G, Dachille A, Caputo P, et al. Cardiovascular Risk in Women With PCOS. Int J Endocrinol Metab. 2012;10(4):611-8

7.Hillman SC, Dale J. Polycystic ovarian syndrome: an under-recognised problem? Br J Gen Pract. 2018;68(670):244.

8. Taieb A, Asma G, Jabeur M, Fatma BA, Nassim BHS, Asma BA. Rethinking the Terminology: A Perspective on Renaming Polycystic Ovary Syndrome for an Enhanced Pathophysiological Understanding. Clin Med Insights Endocrinol Diabetes. 2024 Oct 28;17:11795514241296777.

9. Joham AE, Norman RJ, Stener-Victorin E, Legro RS, Franks S, Moran LJ, et al. Polycystic ovary syndrome. The Lancet Diabetes & Endocrinology. 2022;10(9):668-80.