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What's in a Name? NIH Proposes Name Change for PCOS

January 29, 2013

The National Institutes of Health (NIH) has proposed changing the name of Polycystic Ovarian Syndrome (PCOS) to eliminate confusion and promote a better understanding of the disease. Formerly known as Stein-Leventhal Syndrome which focused on obesity and irregular menstrual cycles, the name of the disease was changed to include women who did not meet obesity criteria, but exhibited other characteristics. However, PCOS it seems, is not the most accurate name for the hormone disorder.

PCOS effects up to 10% of reproductive aged women and is characterized by a signal miscommunication between the brain and ovaries. Elevated levels of luteinizing hormone instruct cells in the ovaries to produce more androgen. Combined with higher levels of insulin, these hormones interfere with the growth of egg follicles. Small cysts may appear in the ovaries in some women. Irregular periods and other outward symptoms including excess hair growth, acne, and weight gain are common in PCOS, but not every woman experiences these symptoms. In fact, some women with PCOS do not exhibit symptoms other than irregular ovulation or anovulation.

David P. Cohen, M.D., of the Institute for Human Reproduction in Chicago, IL, says the protocol for diagnosing PCOS is unlike other diseases in that much of the diagnosis involves looking at symptoms and eliminating other possible diagnoses. “The diagnosis has always been a clinical ruling out of other disorders based on symptoms, irregular cycles, and level of androgens,” he states. The best way to test for PCOS is with an androgen blood test and by taking a thorough history of the patient’s menstrual cycle patterns. Elevated hormone levels and irregular or absent periods are good indications of PCOS. The name itself suggests ovarian cysts are the primary criterion for diagnosing the disease, when that is not the case. Dr. Cohen says the name PCOS describes anatomy and perhaps a more appropriate name for the disease would be oligoovulation with or without elevated androgens.

Currently, there are three scales being used to assess for PCOS: the Rotterdam Criteria, the NIH Criteria, and the Androgen Excess and PCOS Society Criteria. Dr. Cohen believes that having three measures with which to diagnose PCOS only confuses the patient. “For the most part, physicians recognize PCOS and know the criteria associated with the disease, but it confuses the patients who may not understand the criteria, the symptoms, and the associated risks of diabetes or obesity,” he states. If a patient is uneducated about the health risks associated with PCOS, including cardiovascular disease, thyroid disease, or diabetes, they may not feel a sense of urgency to be monitored for these risks or even seek the assistance of a fertility doctor to regulate ovulation. Cohen advises, “The risk of diabetes needs to be discussed, especially if the woman is trying to have a baby.” Diabetes is known to increase the risk of birth defects, and women with PCOS may be at increased risk of miscarriage.

Genetic and environmental factors have been linked to PCOS, though the cause is not fully understood. To find a fertility doctor who specializes in diagnosing and treating PCOS, contact our Patient Care Coordinators at 1-855-955-BABY (2229).


Comments (2)

Yes please! I suffered under dozens of misdiagnosis for decades and just kept getting worse because ultrasounds of my ovaries revealed no cysts. Now through a correct diagnosis, a changr in diet and medication and now I am on the road to recovery at last. 9 year old me would have had a much easier time if she had been diagnosed as soon as these symptoms started manifesting

So glad to hear you were properly diagnosed! If you are looking for a fertility doctor who specializes in PCOS, be sure to give us a call at 1-855-955-BABY (2229).

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