A hormonal condition that affects tens of millions of women is being renamed. Here's why that's important

After thomas more than a decennary of word and deliberate, polycystic ovary syndrome, commonly known as PCOS, is getting a rebrand. 

The chronic hormonal disorder will now be called polyendocrine metabolic ovarian syndrome, or PMOS. 

The condition, which is estimated to affect around 170 million women worldwide, can cause a range of symptoms including irregular or disrupted menstrual cycles, infertility, excessive facial hair and mental health issues. 

The new name was published in The Lancet and announced Tuesday at the European Congress of Endocrinology in Prague. 

"It's very exciting for patients with PMOS because they will have better care. They will know and understand their disease better," said Donna Vine, principal investigator for research and community outreach program PCOS Together at the University of Alberta in Edmonton. 

"With 30 or 40 years of research, we've realized that this is more about hormones and metabolism, not just about the ovary." 

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In Canada, women are diagnosed with PMOS when two out of the following three criteria are met: 

People with PMOS can experience a wide range of symptoms, including abnormal periods, acne or oily skin, hair thinning or female-pattern baldness and challenges getting pregnant. They can also struggle with anxiety, depression and eating disorders. 

The condition also puts people at greater risk of developing other health issues including obesity, high blood pressure, heart disease, sleep apnea and endometrial cancer. 

Polycystic ovary syndrome didn't accurately identify the condition, mainly because the disorder doesn't actually involve cysts, say experts. 

"It's been 91 years since the syndrome was discovered and named PCOS. I think it's more than time to change it," said Dr. Roland Antaki, an obstetrician, gynecologist and fertility specialist at the University of Montreal's Health Centre. 

When the condition was first discovered, Antaki said it was thought there were cysts in the ovaries. 

"We know very well for a very long time that those are not cysts. What you find in the ovaries are follicles," he said. 

"Having [an] ovarian cyst is a cyst on the ovary, which is a completely different thing."

Follicles are small fluid-filled sacs that support egg growth. Often in people with PMOS, the follicles don't develop properly and can grow out of control. They can also release irregular amounts of hormones that lead to the common symptoms of irregular periods, hair growth or acne. 

The first word in the new name, polyendocrine, relates to how the condition impacts and involves multiple endocrine (or hormone) glands. 

"This is a hormone condition," said Dr. Mathew Leonardi, a gynecological surgeon and associate professor in obstetrics and gynecology at McMaster University in Hamilton, Ont.  

Irregular hormone levels can lead to metabolic issues, says Leonardi, such as high blood pressure, Type 2 diabetes, abnormal glucose or lipid levels. That's where the second word of the new name comes in.  

"I think there's going to be a lot more of a connection with the new name and that will allow for people to feel in some ways more aligned with what their experiences are," he said. 

Sankirthana Dyapa, who was diagnosed with PMOS four years ago, says she's encouraged by the new name and hopes it draws more attention to all symptoms of the illness. 

"The old name … was heavily focused on ovaries and reproductive, which often caused the condition to be viewed mainly as a fertility issue," said Dyapa, a third-year bio-physiology research student at McMaster University. 

"However, not all women with this condition probably want children or define their health through reproduction."

When she was first diagnosed, Dyapa said she was prescribed birth control pills. While they relieved some symptoms, they didn't address others like acne and excessive hair growth, which affected her self-esteem and quality of life. 

"[The doctor] didn't really consider or put a lot of importance on my symptoms in the beginning," she said. "After repeated visits, they were able to take me seriously." 

Dyapa co-founded McMaster's PCOS Society, a club that aims to raise awareness, educate and give voice to others struggling with the condition.

The society's other co-founder, Ojaswinee Sharma, says they've heard stories from other women who say health-care experts have ignored their other symptoms.

"A lot of the women are dismissed earlier on in their life. They're basically [told], 'you can come back in 10 years when you're looking to conceive and start a family,'" said Sharma, a third-year biology student at McMaster. 

"We feel like the [name] PMOS covers the other aspects of symptoms that are often neglected."

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