In August a study was published in the British Medical Journal that questioned whether the expanding disease definitions for PCOS were causing in over and misdiagnosis. In the past couple of years the statics for the amount of women who have the condition internationally have jumped from 1 in 10 to 1 in 5 and in places like India 1 in 2.
PCOS was formally described in 1935 and was originally called Stein-Leventhal Syndrome after the doctors who discovered and defined the group of symptoms presented. We have had a formal diagnostic criteria from the us NIH and this was expanded upon in 2003 under the Rotterdam criteria which state that the 2 of the following must be present for diagnosis:
1. Irregular or no ovulation
2. Excess Androgens and/or physical signs of this
3. Polycystic Ovaries
The study concluded that due to the the widening of diagnostic criteria under the Rotterdam criteria, increasing the prevalence of diagnosis of 4-6.6% to now approx 21%, PCOS is being over diagnosed. The argument being that the criteria can lead to misdiagnosis in teens and when over diagnosed as a syndrome, instead of treating the symptoms individually, that it has lead to long term use of unnecessary medication and an impact on psychological health and wellbeing, especially in relation to future fertility.
Other researchers have since come out against this pointing out that as our understanding of the condition and it’s nuances have developed our diagnosis has gotten better, intervention earlier, management better and long term health impacts have improved.
We are now starting to see advancements in PCOS research including the narrowing down of a PCOS specific gene, the role of the hormone Irisin in teens as an early indicator alongside other diagnostic criteria; and research into the role of gut bacteria in relation to weight gain and hormone health. Although the points made are valid in terms of over diagnosing and possibly causing harm as those who have the condition and have gone through the diagnosis process we a trustees all feel that early diagnosis and intervention would have made a significant impact on our own PCOS journeys.
At this time we know that one of the best things that you can do is find a healthy lifestyle regime that works for you – we’re really talking about diet and exercise. Both diet and exercise are habit forming and where PCOS is concerned gaining symptoms can be rapid but getting them under control after they are there can take a long time and can feel like a chore with lots of ups and downs along the way. If early diagnosis means better management techniques at a younger age that make tackling the next stages easier then we’re all for it.
That being said the study also highlighted the lack of understanding of the condition especially amongst younger patients. As we’ve mentioned before this is something that we work hard on every day – making sure that correct and accurate information is available and doing our best to get inaccurate information corrected wherever it pops up.
The study also talked of the need to redefine the diagnostic criteria to prevent over diagnosis and to do this at an international level. As a charity we have already represented the patient perspective on the possible name change of the condition and we will make sure that we represent your, and our, views on any potential change in diagnostic criteria in the future.
We’d love to know your thoughts on this so either post on facebook or send us a tweet to let us know what you think – is PCOS over diagnosed or are we not doing enough?