Polycystic ovarian syndrome renamed

Polycystic ovarian syndrome (PCOS), which also goes by the name Stein-Leventhal syndrome and affects 1 in 8 women worldwide, has been renamed polyendocrine metabolic ovarian syndrome (PMOS) to more accurately reflect the systemic, multi-organ impact of this common condition...

Formerly known as PCOS, polyendocrine metabolic ovarian syndrome presents variably in different people, although it usually leads to endocrine, metabolic, and ovarian dysfunctions to some extent.

The prevailing view is that PMOS is caused by abnormalities in the levels of several hormones, including oestrogen, progesterone, androgens, and insulin.

Currently, the syndrome is diagnosed by meeting at least two of the following criteria: irregular menstrual cycles, heightened testosterone levels, and polycystic ovaries. PMOS is one of the leading causes of infertility in women and also carries a long-term risk of insulin resistance, type 2 diabetes, and obesity.

Worldwide, estimates are that around 10-13% of reproductive-age women are affected by the condition, although up to 70% of PMOS cases likely go undiagnosed. Lack of public awareness of the condition may be causing this: the former name put emphasis on this condition affecting the ovaries, when, in reality, a woman need not have polycystic ovaries to meet the criteria for diagnosis.

Research shows that this disorder is not just a reproductive condition: its effects extend beyond the ovaries. Indeed, PMOS is a multisystem disease, with impacts on the endocrine, metabolic, reproductive, psychological, and dermatological systems1. Women with PMOS often complain of depression and anxiety, and dermatological effects, including acne or hirsutism, are also commonplace.

“PMOS has affected my life massively. I’ve been affected by irregular periods, increased hair growth, acne and weight fluctuations. When diagnosed, I was just made to be put on the pill to hopefully regulate my menstrual cycle but I never had much support in terms of the other symptoms I experienced. But now, it feels like it’s being taken much more seriously. It affected my self esteem and mental health for a long time and still does. I think this renaming is a big push forward into the research,” remarks Zoe Winnington, a woman who has been diagnosed with PMOS.

The multi-organ, systemic nature of the condition is one of the reasons why there was a global push to rename it. Patients and researchers suggested that PCOS was an inaccurate description of the disorder, placing excessive emphasis on the polycystic ovarian trait that some women with the syndrome don’t even have. Additionally, it is possible to have polycystic ovaries, but not have PCOS. Clearly, the name causes confusion around the nature of the disorder.

Researchers and health professionals believe the name change will bring many benefits. By addressing it by its root cause (endocrine and metabolic dysfunction) rather than the symptoms it can cause, it is believed that this will provide greater clarity and scientific accuracy on what the condition involves. Most importantly, by providing this clarity within the name, experts hope that diagnosis rates will improve as more women recognise the manifestations of the condition and seek out a diagnosis. The rebrand also aims to remove stigma surrounding the diagnosis among adolescents, where the presence of ovarian cysts is not used as a diagnostic criterion. By bringing awareness to the fact that this is a metabolic disorder, diagnosing women who lack the polycystic ovary trait becomes less confusing under the new name.

“The impact of renaming is that PMOS is now not just polycystic ovaries, it is a condition that affects the whole body and therefore is taken more seriously by practitioners. The approach from practitioners whilst treating these patients will be more holistic and patient centred. I certainly believe it will remove the stigma and encourage more patients to come forward for diagnosis,” Madhavi Guntamukkala, a general practitioner at Park Grove Medical Centre, told The Naked Scientists.

Given how significantly underdiagnosed this complex chronic disorder is, pushing for greater advocacy on the condition is not just helpful, but absolutely necessary. Though there is no way to cure PMOS, introducing lifestyle changes to try to balance levels of specific hormones can help the condition be more manageable. Having the support of a doctor who understands the condition and can prescribe targeted medication can make living with it easier - we can hope that more women will seek diagnosis for their symptoms now that PMOS has a clearer name.