The Impact of a New Name

Why renaming my health condition could – Over the past decade, a significant shift has occurred in the medical community regarding the classification of a common hormonal disorder. The International PCOS Network recently announced a change in terminology, renaming the condition from polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS). This update aims to highlight the condition’s broader implications, moving beyond its association with ovarian cysts to emphasize its effects on the endocrine and metabolic systems. Advocates hope this new name will foster greater awareness, improve diagnostic accuracy, and encourage more targeted treatment approaches.

Rochelle Lewis’s Journey

Rochelle Lewis, a 31-year-old from Birmingham, spent years navigating a confusing array of symptoms before receiving a diagnosis. Her struggles included persistent pain, excessive facial hair, and a feeling of bloating that disrupted her daily life. The moment she learned the condition could impact her fertility felt like a personal crisis. “It was absolutely devastating,” she said, reflecting on the emotional toll of the revelation. “You imagine your life as a girl, with dreams of motherhood, and then you’re told the thing you want most might not happen.” This diagnosis came in February of this year, after a long process of testing and consultations with healthcare professionals.

“One of the things I’ve always wanted in life was to become a mum. When you’re told the one thing you desire most is likely to be unattainable, it feels like the world has shifted beneath your feet.” — Rochelle Lewis

Lewis’s experience inspired her to launch a wellness business, offering support and resources for women dealing with similar challenges. While she eventually conceived her son, the journey left her feeling overwhelmed. She acknowledged the renaming of the condition as a hopeful step but remained cautious about its broader impact. “I hope it opens the door for more women to get diagnosed quickly,” she said. “But I’m not sure it will create the wider change we need.” For Lewis, the focus remains on improving access to care and reducing the stigma surrounding the disorder.

Understanding the Condition

The NHS reports that PCOS/PMOS affects up to one in 10 women in the UK, with symptoms ranging from irregular menstrual cycles to weight gain and excessive hair growth. The condition is linked to elevated levels of male hormones, known as androgens, which can disrupt ovulation and fertility. Recent research also highlights its connection to high insulin levels and an increased risk of type 2 diabetes in adulthood. Despite these findings, many women feel their experiences are not fully recognized. “It’s not just about the ovaries,” explained Shireen Forster, a 33-year-old from London. “It’s about the entire body—your metabolism, your hormones, and how they all interact.” Forster, who founded a clinic specializing in hair removal for women with PCOS, emphasized the need to view the condition holistically.

“This is your metabolic system. This is your endocrine system. It’s all these things linked.” — Shireen Forster

Forster’s clinic serves as a hub for women struggling with the physical and emotional challenges of the disorder. She noted that many clients lose confidence due to symptoms like facial and body hair growth, which often appear on the chest and back. “It completely takes away their confidence,” she said. “They feel isolated, like there’s something wrong with them.” The name change, she argued, better reflects the condition’s systemic nature. “I think it’s important for people to understand that PCOS/PMOS isn’t just a reproductive issue—it’s a full-body condition that affects multiple systems.”

A Decade of Advocacy

The push for a name change has been spearheaded by organizations like Verity PCOS, which has been campaigning for years. Kate Morris, a volunteer and former trustee of the charity, was diagnosed with the condition at 19. Her early struggles with diagnosis in the 1980s left her frustrated. “I wasn’t happy. I knew my body wasn’t functioning properly, and I wasn’t ready to just accept it,” she recalled. A locum GP finally confirmed her condition, but the moment was bittersweet. “She said: ‘Come back when you want to have children’—which is what people always hear at the time,” Morris added.

“I wasn’t prepared to put up with it. I wanted to understand what was happening in my body.” — Kate Morris

Morris played a key role in establishing a support group in Coventry and Warwickshire. She believes the new name will help demystify the condition for both patients and healthcare providers. “It’s a momentous change,” she said. “Now, when a woman is diagnosed, the name itself conveys the complexity of the disorder. It gives them a sense of legitimacy and opens up conversations about metabolic and endocrine factors.” However, she stressed that the name alone isn’t enough. “We need more than just a new label—we need better education and more resources.”

Building a Support Network

Shireen Forster, who also experienced the emotional weight of PCOS/PMOS, echoed this sentiment. After her own diagnosis at 18, she created LaserMeOut, a clinic in Birmingham focused on addressing the condition’s visible symptoms. She highlighted the importance of community in managing the disorder. “Women want to meet others who are going through the same thing,” she said. “They just need a space to share their stories and feel understood.” This desire for connection has driven the growth of support groups across the UK, including in Staffordshire and Worcestershire. Morris, who now leads one of these groups, emphasized the need for continued advocacy. “The name change is a start, but we have to keep pushing for recognition and treatment that addresses the root causes,” she said.

“All they want to do is meet up with other women who are going through this and just sit down and have a talk.” — Shireen Forster

While the renaming of the condition has generated excitement, experts caution that it must be paired with systemic changes. The NHS has acknowledged the importance of the updated terminology but is still working to integrate it into routine care. For women like Lewis and Forster, the change represents a step toward visibility. “I feel proud that the name now reflects the true nature of the condition,” Forster said. “But we still have a long way to go to make sure every woman gets the support they need.” As the medical community adopts the new label, the hope is that it will pave the way for more comprehensive approaches to diagnosis, treatment, and patient care.

Toward a New Understanding

The transition from PCOS to PMOS underscores a growing recognition of the condition’s multifaceted impact. For women who have long felt dismissed or misunderstood, this shift offers a fresh perspective. “It’s like the world finally sees what we’ve been fighting for,” said Lewis. “But we need more than just a new name—we need action.” This includes better education for healthcare providers, more targeted therapies, and stronger community networks. As the name change gains traction, the focus now turns to ensuring it translates into tangible improvements for those affected. With ongoing advocacy and research, the goal is to transform how PCOS/PMOS is perceived and managed, giving women the tools to reclaim their health and future.