Information about Polycystic Ovarian Syndrome (PCOS)

Recently, I have had a run of several young women who have presented (accompanied by their mothers) having received a diagnosis elsewhere of polycystic ovarian syndrome (PCOS). They have looked this up online and they are relatively distraught having learned about issues of infertility, insulin resistance, and a predilection later in life for diabetes. None of these recent cases truly had the entity itself. What they had was not unusual for late adolescence (women in their teens and even early twenties) whose menstrual cycle is still slightly irregular because of the fact that the hypothalamic-pituitary-ovarian axis has not yet matured, and someone performed an ultrasound and they had multiple small follicles in their ovary, and thus, were told they had polycystic ovarian syndrome. 

The original description of the entity was called Stein-Leventhal syndrome and, basically, these patients looked a little like Humpty Dumpty – they were obese, they had male-pattern hair growth (chin especially), and blood work showed increased androgens (testosterone and an entity know as DHEA-S). The problem began in 2003 when an international conference in Rotterdam produced what was known as The Rotterdam Criteria for the Diagnosis of PCOS. At that time the consensus was if a women had two of the following three characteristics she could be labeled as having PCOS. They were 1) irregular menses, 2) increased androgens (either in their blood or clinical manifestations), and 3) more than twelve follicles in their ovary on ultrasound. The problem is, however, that many young women, as stated above, will be having slight irregularity to their menses as the cycle “matures,” and as the resolution of transvaginal ultrasound has increased, as many as 50% of women will have more than twelve follicles in their ovary. These recent patients that I saw were 1) not obese, 2) had no evidence of increased androgens, either clinically or in their blood, and 3) were extremely healthy. They have what I have now referred to as “multicystic ovaries,” which are common and not abnormal in younger women. It has been my experience that the overwhelming majority of such patients, as they get into their mid- and later twenties, ultimately have very normal menstrual cycles, normal fertility, and no increased risk of insulin resistance or diabetes. 

Too many healthcare providers are still functioning under these misconceptions. However, some papers have called for using a threshold of more than twenty-five follicles per ovary. Other groups have recommended a threshold of greater than twenty follicles per ovary. It is also, in my opinion, important as to how the follicles are arranged in the ovary. In the original description of polycystic ovarian syndrome, the follicles were all very peripheral and often were referred to as a “string of pearls,” as opposed to just an increased randomly distributed number of follicles. 

Furthermore, there is a group known as the Androgen Excess and PCOS Society that has gone on record as saying that women who have irregular menses and multiple follicles, but no evidence of increased androgens should not be labeled as PCOS. Finally, an NIH workshop in 2012 recommended that the name “PCOS” be changed to “metabolic reproductive syndrome” because PCOS focuses on the polycystic ovarian appearance, which, as described in detail above, is the least sensitive factor for making such a diagnosis. However, it is highly unlikely that this “name change” will take hold. 

If you or a daughter or a niece or someone you know has received the diagnosis of polycystic ovarian syndrome, hopefully this information will be helpful. As always, I am available for consultation. 

Dr Steven R. Goldstein is a leading gynecologist in NYC, a menopause specialist in NYC, obgyn Manhattan  and NYC Gyn