Why renaming my health condition could help other women
Why Renaming My Health Condition Could Help Other Women
Why renaming my health condition could – Rochelle Lewis spent years trying to pinpoint the cause of her discomfort, including persistent pain, unexplained facial hair growth, and constant bloating. The moment she learned that her condition could impact her ability to conceive was “absolutely devastating,” she recalled, as it upended her life’s trajectory. Her diagnosis, which came in February of this year, marked the culmination of a long struggle marked by recurring symptoms and multiple tests. The revelation that her hormonal imbalance might prevent her from becoming a mother left her feeling “like my whole world had come to an end,” she said. “When you have an idea of your life and how it’s going to pan out from a little girl, to then be told ‘actually, the one thing that you want most is most likely not going to happen’—it’s completely life-altering.”
The New Name and Its Potential Impact
Following a rebranding effort by the International PCOS Network, the condition has now been officially renamed from polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS). Advocates hope this shift will foster a deeper comprehension of the disorder and encourage more effective treatment strategies. For Lewis, who launched her own wellness business after the diagnosis, the new name symbolizes a pivotal moment. She believes the change could help women like herself feel less isolated, enabling quicker identification and better support. “I just think that we get told you have PCOS and you get left to it,” Lewis said, reflecting on her journey through medical consultations from the age of 18. “The name change might open the door for more women to receive timely diagnoses, but I’m not sure it will spark a broader transformation.”
Shireen Forster, another advocate, shared her own story of living with the condition since 18. She founded LaserMeOut, a clinic in Birmingham, after her own struggles with facial and body hair growth. Forster emphasized that the renaming better captures the condition’s broader implications. “This is not just cysts in women’s ovaries,” she stated, “but your metabolic system—the way your body produces energy—and your endocrine system, which regulates hormones. It’s all these things linked.” Her first child, born last year, gave her a renewed sense of purpose. “I feel proud about the name change,” Forster added, “because it helps shift how we perceive the condition, moving beyond the misconception that it’s solely an ovarian issue.”
Broader Implications for Diagnosis and Treatment
According to the NHS, PCOS/PMOS affects up to one in 10 women in the UK, with symptoms such as irregular menstrual cycles, excess hair growth, and weight gain. The disorder, which has no cure but can be managed through lifestyle adjustments and medication, is also linked to elevated insulin levels and a higher risk of developing type 2 diabetes later in life. Kate Morris, a key figure in the charity Verity PCOS, described the name change as a “momentous” step. As a volunteer and former trustee of the organization, Morris has long championed the need for more accurate terminology. “It will give patients the leverage to say, ‘it’s in the name, what’s happening to me is metabolic and endocrinological,’ ” she said, highlighting the importance of clarity in medical communication.
Morris, who was diagnosed at 19, recounted her own journey in the 1980s, when she faced delays in getting a proper diagnosis. “I wasn’t happy. I knew my body wasn’t functioning properly and I wasn’t prepared to just put up with it,” she explained. “She then said: ‘Come back when you want to have children’—which is what people always hear at the time.” This experience inspired her to create support groups in Coventry and Warwickshire, as well as in Staffordshire and Worcestershire, to connect women facing similar challenges. Verity PCOS has been campaigning for this name change for over a decade, aiming to improve awareness and reduce the stigma associated with the condition.
Empowering Women Through Awareness
For many women, the symptoms of PCOS/PMOS extend far beyond the ovaries, affecting their self-esteem and daily lives. At Forster’s clinics, she observed how women often grapple with confidence issues due to visible signs like facial and chest hair. “It completely took away their confidence,” she said, underscoring the emotional toll of the condition. Despite the challenges, Forster remains optimistic about the renaming, believing it could spark a cultural shift in how the disorder is understood. “Women want to meet others who are going through this,” she noted, “and have meaningful conversations about their experiences. There needs to be more of a community.”
While the new name aims to address some of these challenges, advocates stress that the change alone isn’t enough. The NHS and organizations like Verity PCOS continue to push for improved access to specialist care. “We’re still waiting for more referrals to experts who recognize the endocrine and metabolic aspects of the condition,” Morris said. She argued that the terminology shift could serve as a catalyst for better healthcare practices, but the real impact depends on how widely it is adopted. “It’s not just about the name,” she added, “but about ensuring women receive the comprehensive care they need.”
Both Lewis and Forster have experienced the transformative power of community and support. Lewis, who now has a three-month-old son, found solace in her wellness business, which focuses on holistic approaches to managing the disorder. “It’s a way to empower others who are going through the same thing,” she said. Forster, meanwhile, sees her clinic as a space where women can reclaim their confidence and find collective strength. “The name change helps us see the condition as more than just a physical issue—it’s a holistic challenge,” she explained.
As the conversation around PCOS/PMOS continues to evolve, the focus remains on improving understanding, diagnosis, and treatment. The International PCOS Network’s decision to rename the condition reflects a growing recognition of its complexity and the need for a more inclusive framework. For women like Lewis and Forster, the change represents a small but significant victory in their fight for better healthcare and societal acceptance. “I hope this makes people realize that PCOS isn’t just about the ovaries—it’s about the entire body,” Lewis said. “And that’s something worth addressing.”
Kate Morris, who has been advocating for this cause since her own diagnosis, remains hopeful. “The name change is a step in the right direction,” she said