Rethinking the “C” in PCOS

by rootin Hormonal& Metabolic disorderson Posted on

In the past few years, Polycystic Ovary Syndrome (PCOS) has become a widely discussed topic, especially on social media. However, outside the medical and scientific community, do people really know what it is? The short answer: not quite. 

PCOS is the most common endocrine-metabolic disorder affecting women across most of their lifespan1. The endocrine system regulates vital body functions through hormone production and secretion. While the exact cause of PCOS is unknown, the condition involves a disruption of the hormonal balance with genetics and lifestyle factors also playing a role in its occurrence. This gives rise to a wide spectrum of symptoms, the most popular being irregular menstruation and infertility. In future articles we will dive deeper in the aetiology, clinical presentation and treatment methods currently used for PCOS to fully capture the intricacies of the disease. To begin with, we must highlight that the complexity and misconceptions regarding this disorder begin with its name – the term “polycystic”, which fails to capture the broader hormonal and metabolic dimensions of the condition.

In medical terminology a cyst is defined as “any fluid-filled closed cavity or sac that is lined by an epithelium”2. Cysts can vary in type and can occur in multiple organs, including the ovaries. Although in PCOS ovaries can have a polycystic morphology3, the small fluid-filled structures seen in ovaries are actually immature ovarian follicles and not cysts in their clinical definition. Ovarian follicles normally exist and hold immature oocytes (eggs), which mature during menstrual cycle and may eventually be released through ovulation. In PCOS, the hormonal imbalances, particularly the elevated androgens and luteinising hormone (LH) levels, lead these follicles to fail to mature and ovulate. Instead, they remain small and cluster together, creating the appearance of cyst-like structures during imaging4, such as ultrasounds. 

Why was the term “polycystic” used in the first place? 

Simply because early observations identified these immature follicles this way, based on the knowledge available at the time regarding PCOS3. This is a reflection of how science progresses, where it is common for early conclusions to be revised and/or refuted as new evidence emerges. However, if our understanding has advanced, why does this outdated term still persist in medical practice? And more importantly, why does the name matter? 

It matters because names shape perception. The term “polycystic” has influenced not only the science’s approach on PCOS but also the patient’s perception of it. Clinically, some physicians continue to rely heavily on ultrasound findings, which can delay recognition of the underlying metabolic and hormonal drivers of PCOS5. For decades, research agendas were also skewed toward ovarian morphology rather than systemic mechanisms such as insulin resistance and androgen imbalance, culminating into the fragmented picture we see today. Even the health-tech industry has been affected, with apps and diagnostic tools targeting and promising treatment of these “cysts”, neglecting the full picture of the condition. 

For many patients, the label “polycystic ovary syndrome” evokes stress and fear. Many believe that they have “dangerous cysts” that will threaten their fertility permanently, while others fail to recognise symptoms like weight gain, acne or mood changes that could be related to PCOS and have considerable impacts on daily life. When both patients and clinicians focus narrowly on ovarian appearance, the broader systemic effects of PCOS may be overlooked or dismissed. Many surveys consistently report high levels of patient confusion regarding the relationship between the biology of the condition and its name. Unsurprisingly, a 2025 review by Teede et al. found that 85.6% of patients and 76.1% of health professionals supported renaming the condition to better reflect its full spectrum of symptoms and impacts6.

Renaming PCOS – a catalyst for change

Fortunately, in the past few years the discussion has shifted, with the recognition of PCOS as a systemic disorder requiring multidisciplinary care. However, this progress is rather slow and still in early stages. Public understanding remains limited and misconceptions still persist. Experts have proposed alternatives such as “Ovarian Dysmetabolic Syndrome” or “Ovarian Dysfunctions and Dysmetabolic Syndrome”3, which could reflect the hormonal and metabolic dimensions of PCOS more accurately. 

But is a rebranding enough to solve the problem? Not entirely. As with many challenges in science and medicine, there is no “one-cure-for-all” kind of solution. Still, renaming the condition could be a powerful catalyst to reframing the conversation. It could help patients better understand their condition, reduce confusion, and improve diagnosis and treatment by clinicians. Language doesn’t just shape public perception, it influences scientific discourse and policy. In the case of PCOS, moving beyond the term “polycystic” could mark the beginning of a more holistic and inclusive approach to care.

References

  1. Sydora, B. C., Wilke, M. S., McPherson, M., Chambers, S., Ghosh, M., & Vine, D. F. (2023). Challenges in diagnosis and health care in polycystic ovary syndrome in Canada: a patient view to improve health care. BMC Women’s Health, 23(1), 569. https://doi.org/10.1186/S12905-023-02732-2
  2. Cysts – MeSH – NCBI. (n.d.). Retrieved October 7, 2025, from https://www.ncbi.nlm.nih.gov/mesh?Db=mesh&Cmd=DetailsSearch&Term=%22Cysts%22%5BMeSH+Terms%5D 
  3. Taieb, A., Asma, G., Jabeur, M., Fatma, B. A., Nassim, B. H. S., & Asma, B. A. (2024). Rethinking the Terminology: A Perspective on Renaming Polycystic Ovary Syndrome for an Enhanced Pathophysiological Understanding. Clinical Medicine Insights. Endocrinology and Diabetes, 17, 11795514241296776. https://doi.org/10.1177/11795514241296777 
  4. Lujan, M. E., Jarrett, B. Y., Brooks, E. D., Reines, J. K., Peppin, A. K., Muhn, N., Haider, E., Pierson, R. A., & Chizen, D. R. (2013). Updated ultrasound criteria for polycystic ovary syndrome: reliable thresholds for elevated follicle population and ovarian volume. Human Reproduction (Oxford, England), 28(5), 1361–1368. https://doi.org/10.1093/HUMREP/DET062 
  5. Azziz, R. (2014). Polycystic Ovary Syndrome: What’s in a Name? The Journal of Clinical Endocrinology & Metabolism, 99(4), 1142–1145. https://doi.org/10.1210/JC.2013-3996 
  6. Teede, H. J., Moran, L. J., Morman, R., Gibson, M., Dokras, A., Berry, L., Laven, J. S. E., Joham, A., Piltonen, T. T., Costello, M. F., Norman, R. J., & Bahri Khomami, M. (2025). Polycystic ovary syndrome perspectives from patients and health professionals on clinical features, current name, and renaming: a longitudinal international online survey. EClinicalMedicine, 84, 103287. https://doi.org/10.1016/J.ECLINM.2025.103287

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