Polycystic ovary syndrome
Despite PCOS being a very common health condition, its cause and best ways to treat it are not fully understood. More research is needed to improve patients’ experiences and outcomes.
This page provides information on PCOS and our work to improve access to healthcare for this health issue.
The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer
What is polycystic ovary syndrome (PCOS)
- PCOS affects 1 in 8 women and those registered female at birth in the UK
- In Wales, there are around 200,000 people living with PCOS, but many of them will not have a formal diagnosis.
- PCOS affects different ethnicities at different rates, with South East Asian women more likely to be affected.
- PCOS can present in a number of ways across the life span and lead to other long-term health conditions, like diabetes.
- PCOS is an endocrine disorder but has life-long metabolic and long-term health impacts, such as cardiovascular risks and fatty liver disease.
PCOS can present in number of ways at various stages of life. Common symptoms of PCOS include irregular periods, excess facial and body hair, insulin resistance, excess weight, and thinning of hair due to increased levels of male hormones (sometimes described as male pattern baldness).
According to NHS Wales, PCOS is usually diagnosed via hormone tests and, sometimes, an ultrasound scan, which can show whether you have multiple cysts on your ovaries.
It is not unusual for females to develop cysts around their ovaries in their lifetime and having a cyst does not always mean you have PCOS. Clinicians will look at your symptoms and test results, as well as the size, nature and number of cysts to see if a PCOS diagnosis is appropriate.
In Wales, treatment for PCOS might be managed by your GP or you might be referred to a specialist. This might be either a gynaecologist (someone who specialises in treating conditions of the female reproductive system) or an endocrinologist (someone who specialises in treating hormone problems). However, waiting lists for both specialties are long.
Treatment plans for PCOS patients will vary from individual to individual because the condition has so many different presentations, symptoms, and co-morbidities. It is important that care should be as joined-up and holistic as possible.
Some experts believe that the name of the condition (Polycystic Ovary Syndrome) might be one reason why lots of women describe long diagnostic delays, because symptoms associated with non-cancerous gynaecological conditions tend to be normalised or not taken seriously.
More information about PCOS symptoms and treatments can be found at on the NHS Wales website here.
What are we calling for?
Our overall aim is to raise awareness of PCOS, dispel myths, and ensure patients in Wales have access both to evidence-based information and optimum care for this condition.
Despite PCOS being a very common health condition, its cause and best ways to treat it are not fully understood. More research and more investment is needed to improve patients’ experiences and outcomes. It is really important that this condition is prioritised by governments, researchers, and healthcare providers, because it can have serious long-term consequences for women’s health which can incur significant costs for health services, the economy – and women themselves.
The numbers of women, girls and those registered female at birth affected by PCOS are increasing across the UK, with Wales no exception.
It is unclear if the rise in numbers living with PCOS is due to improved diagnosis or for another reason – more research is needed to better understand prevalence and impact.
Patients can experience barriers in securing referrals to secondary care from primary care, partly because the symptoms of PCOS are not always widely recognised. The care on offer varies from health board to health board, with rural areas not always very well-served.
The co-morbidities that exist with PCOS are also on the rise and the links between the two are not well understood. These include Type 2 Diabetes and Cardiovascular Disease.
We need to:
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See PCOS prioritised in Wales, given its growing prevalence, the long-term health implications and costs.
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Increase awareness of PCOS, its symptoms, risks, and management amongst public, patients, and healthcare professionals
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Bust myths about PCOS, making clear that it is not the same as ovarian cysts, and ensure that bilingual evidence-based information is widely available
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Improve access to optimum, joined-up care so that patients with multiple health issues arising from the disorder can have the best experience and outcomes.
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Ensure that PCOS is treated holistically rather than just focused solely on reproductive health. However, because the condition often results in fertility issues, these also need addressing promptly and with appropriate support for those who wish to grow their families.
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See increased investment in research into PCOS in Wales and more funding allocated to prevention, treatments, and a cure.
Our champion: Rachel P
“I support FTWW’s campaign for PCOS because it still feels like a very misunderstood medical condition. Like many other health issues, the symptoms and long-term health implications associated with PCOS are often minimised, or worse, completely misdiagnosed.
Raising more awareness for the condition is crucial to support women who are suffering, but also highlight the need for better education and understanding of the condition for patients and clinical professionals.
There are still a lot of assumptions around the associated symptoms of PCOS, for example weight gain or obesity, acne, excessive hair growth to name a few. However, for myself and I imagine many, many others, these symptoms were not applicable in my case, and I believe this stereotype of linking PCOS to these more “common” symptoms led to the long delays in my diagnosis.
More needs to be done to bring in a more inclusive approach to testing and diagnosis of PCOS and not basing diagnosis off just symptoms alone. “
What have we achieved?
Our campaign activity to improve the lives of those living with PCOS is extensive. Some of our achievements are outlined below:
We raise awareness through events, media, training and fundraising
- We support FTWW members and volunteers to share their experiences around PCOS with the media to help raise awareness of the condition and its impact. See this example on BBC website.
We take part in consultations, advisory boards and co-production of healthcare
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We attend meetings with the NHS Wales Executive’s Planned Care Programme, where we have the opportunity to raise awareness of the need for joined-up care for conditions like PCOS, and the importance of hospitals collecting data on Patient Experiences and Outcomes to enhance learning and improve care.
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We meet regularly with the Welsh Government’s Women’s Health Policy Team and NHS Wales Clinical Strategic Network for Women’s Health to ensure PCOS is prioritised at the highest levels.
We engage directly with policy makers and researchers
- We ensured evidence about PCOS featured in the Women’s Health Wales Coalition’s report to the Welsh Government ahead of the publication of the NHS Wales 10-year Women’s Health Plan.
- FTWW is working with the Verity PCOS charity and Cardiff University on a James Lind Alliance Research Priority-Setting Partnership which aims to identify the most pressing issues, uncertainties, and areas where research is needed for PCOS patients across the UK, including Wales.
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PCOS stories
Advocating for yourself or someone else
Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.
We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.
Useful links and documents
Verity PCOS
Verity is a a self-help group for those with polycystic ovary syndrome (PCOS)
FTWW's bi-lingual PCOS leaflet
This flyer provides a brief overview of our work in this area and why it is needed
English (UK) 
Cymraeg