As many as 1 in 8 women have a hormonal disorder that was up until now called polycystic ovary syndrome, or PCOS. But an estimated 70% of them don’t know it. Now, through a collaborative process with patients and healthcare workers, medical experts hope to improve diagnosis and treatment with a more accurate name. It will now be called polyendocrine metabolic ovarian syndrome, or PMOS.Related video above: Endometriosis recognition brings validation and treatment optionsThe original name implies that people with it have multiple abnormal cysts in their ovaries. That comes from when the syndrome was first observed in the 1930s, when doctors who would physically examine patients' ovaries during operations noticed that they looked bumpy. A group of international medical experts announced the change in a paper published in the medical journal The Lancet, determining that the original name was misleading. “The term polycystic ovary implies the presence of pathological ovarian cysts,” they wrote, which are not more common in people with the syndrome than in people without it. In other words, those types of cysts do not need to be present for someone to be diagnosed with the condition, which is not what the previous name would imply. That has led to confusion for patients, who may have gotten the wrong idea about what their diagnosis means, and physicians have also said the name needed to change.The kinds of “cysts” that are associated with PMOS are really eggs that have not fully matured as a result of the syndrome’s hormonal effects and are called arrested follicles. They can be visible on the ovaries in an ultrasound.According to the paper’s authors, the cyst-focused language has contributed to “delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing.”Experts also said the previous name led to too much focus on the ovaries themselves and less on the other aspects of the syndrome. Because the condition is hormonal, it can lead to downstream problems with metabolism, weight, reproduction, skin and mental health, including obesity, Type 2 diabetes, cardiovascular disease and obstructive sleep apnea. But clinicians do not always warn patients or refer them out for those conditions because of the focus on the ovaries, experts told the New York Times.The name also contributed to the syndrome being viewed as gynecological, even though it affects many other systems of the body. That fact has limited the kind of funding available to researchers, and it means medical students are mostly taught about it in gynecology classes.The new name highlights the importance of endocrine (chemical messenger system) and metabolic (downstream effects, like insulin resistance or obesity) abnormalities. Through a participatory process with patients, the group chose to keep “ovarian” in the name, preferring it over “reproductive.”Experts hope the shifted focus will help grow understanding and improve treatment. It may also help open up new avenues for research funding, which is necessary to develop new treatments.The New York Times reported that one of the paper’s authors, Dr. Melanie Cree, hopes PMOS research will now become eligible for funding through parts of the National Institutes of Health that cover issues like diabetes and heart disease. That would mean more potential funding than is directed toward reproductive health alone.The process of coming up with a new name involved surveying thousands of people around the world with the syndrome and healthcare professionals."It was a really robust process, and the community was involved at all stages," Dr. Helena Teede, an endocrinologist and chair of the group that led the effort, told Live Science. "We hope that people will understand and respect the process — understand that it wasn't made behind closed doors with a few small expert groups, which is what normally happens."The consortium’s paper included a three-year plan to help publicize the new name and implement changes in healthcare and policy.