A global survey is currently underway to rename Polycystic Ovary Syndrome (PCOS), a condition that impacts millions of women worldwide. The impetus for the initiative was to give a new name of the disorder that would accurately capture the nuances and symptoms of this disorder. The survey that has now collected over 6,500 responses will be open through the end of August—click here to add your voice!
The name change campaign has just begun. It is particularly timely as an answer to the recent acknowledgment that the PCOS label may fail to capture the lived experience of this complex condition. The survey offers three main approaches: adopting a generic name, selecting a name that captures the pathology and symptoms more accurately, or retaining the acronym PCOS while revising what each letter stands for. This joint effort continues the past six years’ surveys of similar kind. Over the course of those surveys, nearly 8,000 participants took part in focused conversations about one key topic.
In a submission to the Review Professor Helena Teede, a world authority on PCOS, emphasized the need for this essential name change. “PCOS is one of the most neglected and poorest understood conditions,” she said. There is already a consensus among professionals in the field that a name change is essential to enhance understanding and awareness.
Symptoms and Co-occurring Conditions
Women living with PCOS experience a complex range of symptoms that go beyond aspects of reproduction. Caitlin Videon, diagnosed with PCOS at age 16, described her experience: “PCOS provides more sharp stabbing pains, but it affects your digestive system, how your bladder and bowels work, nausea, pain [and] gives me migraines.” Such symptoms can significantly disrupt daily life.
Amy Harrison, who has PCOS in addition to endometriosis and adenomyosis, confirmed this frustration. “It’s not just about the ovaries; it’s actually a hormonal condition,” she explained. Harrison pointed out that a better job is needed in communicating how these various symptoms affect one’s body. “The name itself doesn’t actually explain how the symptoms work and how they interact with her body,” she stated.
Felicity Morrell, an accredited dietician based in Riverland, sees numerous women each week struggling to navigate conflicting information about PCOS. “A lot of clients have said to me the title can be a little bit confusing,” she noted. Women are often terrified by the cloud of confusion that surrounds their diagnosis.
The Push for Change
The constant survey is a symptom of a greater push for change from those who suffer the long-term effects of PCOS. Australian professor Amanda Professor Teede said her Global Women’s Health Equity initiative could have an important impact by providing a new name. “We are very excited, especially on behalf of those who are affected, and really looking forward to the positive changes that will come because of it,” she said.
It now seems only a matter of time before the new name gets implemented. Teede noted, “There is no scenario where the name change would not happen,” indicating that a strategy is already in place for rolling out the new terminology. We hope to complete the formal designation process by the close of this year. We will be rolling out our dissemination strategies early next year.
Whatever the future of a name change, Harrison says there’s great potential to advance public understanding of a revised name. “The name change will help capture how significant and intricate the disease can be when we’re talking about the entire female body,” she remarked. As conversations persist, plenty of people hope that a more approachable name might be able to offset at least some of the weighty stigma attached to PCOS.
