The changed definition of Polycystic Ovary Syndrome may be doing more harm than good.

Though approximately one in five women worldwide suffers from PCOS, its diagnosis is not always effective and treatment methods are inconsistent. A recent expert opinion piece by Australian scientists published in the British Medical Journal argues that the current definition of PCOS may actually harm women while it presents few benefits. They also add that more research is essential diagnose and treat women from different ethnicities and age groups.

Women who suffer from PCOS tend to have higher levels of depression and anxiety, poorer self-esteem, negative body image, disordered eating and decreased sexual satisfaction. The causal link between PCOS and these issues is unclear: is PCOS the underlying reason for them, or do they exist because of the physchological impact of the diagnosis? Because there is no “cure” for PCOS, and it can affect fertility, the psychological impact of the diagnosis is severe.

The authors of the paper argue that the current definition of PCOS leads to the disease being over-diagnosed, with little regard given to the psychological bearing it can have women. Because the disease has a wide set of presenting symptoms, the diagnostic criteria cannot be as homogenous as they currently are, the authors argue. Furthermore, because of a relative lack of data about PCOS, it may be better to err on the side of treating women symptomatically rather than risk over-diagnosis.

Current definition of PCOS

Polycystic ovary syndrome is a commonly occurring condition that causes a woman’s ovaries or adrenal glands to produce more male hormones than normal. The condition is lifelong and has no existing cure. Symptoms range from irregular periods, polycystic appearing ovaries, hirsutism (excess hair) and acne. PCOS is also associated with an increased risk of diabetes, metabolic syndrome, heart disease, high blood pressure, and poorer psychological wellbeing.

The original diagnosing criteria for the problem was first established by the National Institute of Health (NIH) in 1990. Sonographic presence of polycystic ovaries was added to the original NIH criteria in 2003 in Rotterdam after a meeting of experts. This led to an increase in occurrences from 5 percent to 21 percent of reproductive women. Further, clinical or biochemical evidence of hyperandrogenism was also deemed essential for diagnosis by experts in 2006.

Problems with over-diagnosis

Some experts believe that early diagnosis of the disease has long term benefits, but diagnosis during adolescence is not straightforward.

Lead author of the paper, Tessa Copp, says “Many symptoms of PCOS, such as acne and oligomenorrhea, overlap with features common to pubertal development, but diagnostic criteria for PCOS don’t take adolescence into account.”

Diagnosing during early adulthood can be tricky as women who display mild symptoms may be diagnosed even though these conditions may resolve themselves with time.

The change in the definition in 2003 also widened the criteria for diagnosis definition by including non-hyperandrogenic PCOS phenotypes such as women with menstrual irregularity and polycystic appearing ovaries. These women do not face the same long-term issues as women with hyperandrogenism but this may not always be communicated by doctors after diagnosis.

Additionally, due to poor data on the subject matter and lack of long-term follow ups, the authors believe that benefits of treatment are not clear.

“As a result, it is uncertain whether these interventions provide long-term benefit, nor how the existing evidence of treatment benefit applies to the different PCOS phenotypes and women with milder symptoms,” says co-author, Dr Jesse Jansen of the University of Sydney.

Certain women may benefit from a PCOS diagnosis, but for those with symptoms in adolescence, or those with relatively mild symptoms, a diagnosis may actually be doing more harm than good.