Two sisters living with a condition that affects the function of their ovaries say they felt isolated and unsupported as they sought a diagnosis.
Annika Thomas, 39, and Sarah Davies, 44, from Carmarthenshire, both experienced symptoms like irregular periods, infertility, and low mood, which were later linked to polycystic ovary syndrome (PCOS).
Research from Cardiff University reveals that PCOS is becoming more common. It also suggests that because of the various symptoms, women often need multiple medical appointments, costing the UK an estimated £1.2 billion each year.
The Welsh government has stated that its women’s health plan, which will include PCOS, will be released by the end of the year and that it has invested in research on the condition.
During PCOS awareness month, Annika and Sarah shared how they both spent years navigating different appointments before they were finally diagnosed with PCOS.
“I noticed issues with my cycles—they were very light and spaced far apart,” Annika explained. “Because I didn’t have the typical PCOS symptoms, like being overweight or having excess hair or acne, they were hesitant to test me. I had to push for it.”
Annika added, “It took years of chasing up tests before I felt like I got anywhere. It was a frustrating process.”
Now a mother of three, Annika recalled the emotional toll of her infertility struggles before her first son was born in 2018 through IVF. “It was a tough time. I felt so alone and was never offered any support.”
Sarah, on the other hand, experienced a lack of coordination between the different medical appointments she attended for her various PCOS symptoms. “The biggest issue for me was infertility, but I also struggled with acne, weight fluctuations, and low mood,” she said. “PCOS is such a complex condition.”
What Is Polycystic Ovary Syndrome (PCOS)?
PCOS is a condition that affects many parts of the body, including metabolism and ovarian function. It is most commonly known for causing irregular periods due to the ovaries not releasing eggs regularly, which can lead to fertility issues.
Other symptoms of PCOS can include excess facial or body hair, acne, hair loss, and weight gain. Over time, PCOS can increase the risk of depression, anxiety, type 2 diabetes, and heart disease.
A spokesperson from Hywel Dda University Health Board expressed regret that patients were unhappy with their treatment. “We are committed to improving communication between departments so patients are seen by the appropriate clinician as soon as possible.”
A recent study by Cardiff University’s School of Medicine found that more people are now being diagnosed with PCOS. The study also revealed that those from lower socio-economic backgrounds and Asian ethnicities face a higher risk.
Experts agree that more investment is needed for research and better resources to support patients with PCOS.
Professor Aled Rees, an endocrinology expert, pointed out that PCOS has a significant impact on a patient’s quality of life. “It’s a difficult condition to diagnose. The symptoms—irregular or absent periods, weight gain, unwanted hair growth, and fertility struggles—can be frustrating,” he said. “There is still no specific treatment, so further research is essential.”
While awareness of PCOS has grown, there is still a gap in understanding, according to Professor Rees.
Victoria Vasey, director of Women’s Equality Network Wales, said the findings were not surprising. “PCOS is a challenging condition with serious physical and mental health consequences. Late or missed diagnoses only worsen its impact,” she explained.
A Welsh government spokesperson said all health boards are expected to take action to improve the experiences of women and address health inequalities. “This year, we appointed the first-ever clinical lead for women’s health and established a women’s health network. We are working on a 10-year women’s health plan, which will be published by the end of 2024. This plan will include menstrual health and PCOS,” they added.
The Welsh government has also announced a £750,000 investment in research focused on women’s health priorities, which will be launched in 2025.
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