For over twenty-five years, Verity has stood alongside women and girls in the UK and around the world living with Polyendocrine Metabolic Ovarian Syndrome (formerly Polycystic Ovary Syndrome (PCOS)). Our volunteers, all with the condition themselves, have given countless hours, energy, and personal resources, driven by a shared mission: to ensure that the voices of those affected are heard, respected, and understood.
Much of our work has been about correcting misconceptions—like the misunderstanding that the ‘cysts’ in PCOS are not cysts—challenging professionals to truly listen to women’s experiences, and educating patients about the condition’s serious, long-term health impacts. This has been hard, often slow work, but it has been essential. It is this tireless advocacy that has brought us here alongside other organisations globally in their own advocacy and awareness with each country often facing both similar and equally unique issues in how the condition is managed.
At every stage of this advocacy journey since 1997, we have listened—truly listened—to the people most affected by PMOS and the professionals who care for them. Your experiences, insights, and concerns have guided our work. Patients have bravely shared the realities of daily life with PMOS—the physical, emotional, and long-term health challenges. We never underestimate the strength it takes to share these personal experiences. While you may not see it these narratives are key in conveying the lived with experience of the condition. We work with many professionals who have dedicated careers to improving care that have provided their expertise on diagnosis, treatment, and care gaps. Their data and your experiences are a powerful combination. By bringing these perspectives together, we have shaped initiatives, influenced research priorities, and informed decisions with the nuance and depth that only comes from listening carefully and responding thoughtfully; to the point of meaningful change. It was in that spirit we stepped forward as co-applicants.
Verity has been proud to take a leading role in this work. We have been involved in discussions for decades, from 2015 when patients were involved in the guidelines developments; reinitiated the conversation in 2023 as to this condition needing to be shifted in the perception of society. We have been involved in every meeting, helped design surveys, and shared them widely to ensure the voices of our diverse community shaped the process. We have had frank and honest conversations with the experts who have engaged intently to ensure they take on board the views of those who this condition impacts. It has been a respectful and democratic process.
We know it can feel like progress has taken forever, but PMOS is a deeply complex condition. So much hindrance has occurred from the limiting nature of the former name where it’s seen as something that impacts fertility, or reproductive issues. We respect the concerns that time and money would be better spent on other issues other than the name, but that dismisses the factual reality that the old name placed this condition in a narrow area of funding, care and understanding. The name reflecting life long and metabolic issues automatically shifts that conversation. The transition to ensure the name is embedded in practice is probably one of the most important issues the charity will ever deal with; that will take us time, money and advocacy.
This is not something we have considered lightly. We take the responsibility and privilege of representing your voice with the utmost importance. We are patients ourselves and we understand that a new name will not instantly erase the challenges, frustrations, or personal impact of PMOS. However, it is a powerful and necessary step forward. A name that reflects the serious, long-term health consequences of this condition has the potential to transform understanding, open doors to research and funding, and change the way healthcare professionals and society approach it.
Understanding the condition has required a global, collaborative effort involving countless organisations, patients, and professionals. Sometimes we have to wait for all the pieces to come together and the name change happening now has been just that.
It won’t change overnight. So much work still needs to be done as part of the three year transition. The words PCOS will not disappear overnight, they will still be searchable on hashtags or found in literature and linked on journals but the transition will amalgamate them with the new name PMOS. Work will need to take place now in this fresh accurate context that this condition needs action. We can focus our advocacy on implementation of quality care rather than cyclical discussions on what the cysts are; or that it is not gynaelogical in policy, guidelines and curriculum. The focus of preventative action to address long term health consequences can be cemented in patient care.
This is not just a technical change—it is a powerful statement. It is recognition that the experiences of those living with PMOS matter, that the long-term health risks must be taken seriously, that equity of care delivery matters and that the world is finally listening. We have reached a turning point, and we are determined to see it lead to real, lasting change.
Thank you for being part of this journey, for trusting Verity, and for continuing to share your experiences alongside us for understanding, awareness, and better outcomes for everyone affected by PMOS.
For more information see the Lancet article here.
Verity - The PCOS charity 