PCOS: when diagnostic errors and medical minimisation make things worse

What is PCOS and how does it manifest itself? 

Polycystic ovary syndrome (PCOS), also known as Stein-Leventhal syndrome, is a common hormonal disorder affecting around one in ten women of childbearing age. It is the leading cause of hormonally induced infertility in women, and is characterised by an excess of androgens (steroid hormones), leading to a variety of symptoms.

The symptoms vary greatly from one woman to another: irregular or absent cycles, persistent acne, excess hair growth, hair loss, abdominal weight gain, insulin resistance, fatigue, mood disorders and sometimes infertility. Some patients present with few signs, others have several symptoms, which sometimes develop as early as puberty.

The diagnosis of PCOS is based on the Rotterdam criteria (2003, revised in 2023). It is considered as confirmed if at least two of these criteria are present: ovulation disorders, hyperandrogenism (androgen levels significantly higher than normal) or a polycystic appearance of the ovaries on ultrasound, which means that immature eggs develop into cysts that accumulate over time.

A hormone test and an ultrasound scan are therefore essential. Yet despite these tools, almost 70% of cases remain undiagnosed, due to the variability of symptoms and a persistent lack of awareness of the syndrome.

Why is PCOS linked to diagnostic errors and medical minimisation? 

Diagnosing PCOS is often a long and difficult process. It takes an average of 2 to 7 years from the first symptoms to medical recognition. Many women are only diagnosed around the age of 25-30, often during an infertility check-up.

Trivialised or misattributed symptoms 

In adolescence, signs such as acne or irregular periods are frequently blamed on puberty. The contraceptive pill, prescribed at an early age, can mask symptoms without leading to a diagnosis. Later, weight gain, fatigue or mood disorders are often explained by stress or lifestyle.

This phenomenon, known as ‘medical gaslighting(*)’, is reflected in recurring phrases such as ‘it is normal’, ‘it is all in your head’ and ‘lose weight and you'll be fine’. Far from helping, this trivialisation makes the disease invisible and delays treatment.

(*) an act that invalidates a patient's legitimate clinical concerns without appropriate medical assessment, due to the doctor's ignorance, implicit prejudice or medical paternalism.

Variability of symptoms that makes diagnosis difficult 

PCOS does not present itself in the same way in all women: some suffer mainly from menstrual disorders, others from skin or metabolic symptoms. This diversity, combined with a lack of training among healthcare professionals, is a major factor that contributes to delays in diagnosis.

The misdiagnosis of PCOS is not just a medical issue: it is a real public health challenge.

What are the consequences of a delayed diagnosis of PCOS? 

A late diagnosis of PCOS is never harmless. Without appropriate treatment, physical and psychological complications accumulate and become more difficult to cope with.

In terms of physical health, PCOS is not limited to menstrual disorders. It is a genuine metabolic and endocrine syndrome. Delayed diagnosis increases the risk of type 2 diabetes (threefold), high blood pressure and cardiovascular disease, as well as fatty liver disease, sleep apnoea and infertility (the main hormonal cause). However, these complications can be reduced by taking early action (adopting a healthy lifestyle, medical monitoring, hormone treatment if necessary).

Psychologically, misdiagnosis and medical minimisation exacerbate anxiety, depression and loss of self-esteem. Many patients describe a feeling of failure or guilt, often reinforced by the difficulties associated with infertility. This invisibility encourages isolation and further undermines confidence in the healthcare system.

So early diagnosis not only protects physical health, but also restores confidence and improves quality of life for the women concerned.

How can PCOS be better diagnosed and treated? 

PCOS is a hormonal, metabolic and psychological disorder that requires comprehensive care. There are a number of areas where improvements could be made to reduce misdiagnosis and improve patients' quality of life.

Educating healthcare professionals 

The latest international recommendations stress the importance of better training for GPs, gynaecologists and endocrinologists. The aim is to raise awareness of the updated diagnostic criteria (Rotterdam 2023), to recognise the variability of symptoms, particularly in adolescence, and to deconstruct the gender bias which leads to female complaints being trivialised. In young patients, even if the ultrasound criterion is only used after a few years of menstruation, the symptoms (acne, hirsutism, irregular cycles) must be heard and treated without delay.

Having trustworthy doctor-patient relationships 

Many PCOS patients feel misunderstood or guilty. Restoring trust requires a doctor-patient relationship based on respect and listening, systematic screening for anxiety and depression, and clear, educational information about the syndrome and its treatments.

Having a multidisciplinary approach to treatment 

PCOS cannot be effectively managed by a single specialist. Care plan must include different aspects of treatment:

• Gynaecological and endocrinological monitoring (hormone regulation, ovulation),
  
• Nutritional and sports support to reduce insulin resistance,
  
• Psychological support (therapy or discussion groups),
  
• Therapeutic education, to encourage patient autonomy.

Tips for PCOS patients 

Being diagnosed with PCOS, or even just suspecting it, can be unsettling. However, there are a few simple steps you can take to help you prepare for your medical appointments and obtain appropriate treatment:

• Prepare for your medical appointment: note your symptoms (cycles, acne, hair growth, weight, fatigue, mood), learn your medical history and prepare your questions.
  
• Ask for the relevant tests: hormone test, metabolic test, pelvic ultrasound (except in adolescence), to rule out other possible causes (thyroid, prolactin, etc.).
  
• Know your rights: if your symptoms are being played down, seek a second opinion from a specialist.
  
• Get informed and support yourself: join a patient support group (PCOS Europe, etc.), take part in discussion groups, look for reliable information.

In a nutshell 

PCOS affects almost one woman in ten. Too often under-diagnosed and downplayed, it has physical (infertility, diabetes, cardiovascular risks) and psychological consequences (anxiety, isolation, loss of self-esteem).

Solutions do exist: better medical training, a sympathetic ear and multidisciplinary care team can transform patients' lives. Being well-informed - preparing for medical appointments, requesting the right tests, seeking a second opinion, relying on patient support groups- is also a major lever.

PCOS is not inevitable: if it is better recognised and supported, it can be managed effectively to maintain good health and quality of life.

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