Polycystic ovary syndrome (PCOS) is one of the most prevalent health conditions affecting women of reproductive age, yet it remains significantly under-researched and poorly understood. Despite affecting approximately one in seven menstruating individuals and being recognized by the World Health Organization (WHO) as a major cause of infertility, up to 70% of women worldwide are unaware of their diagnosis, according to WHO estimates.
As September marks PCOS Awareness Month, experts are calling attention to the lack of research and minimal advancements in improving patient outcomes. The financial burden of PCOS on the European health sector is estimated at €23 billion annually, underscoring the urgent need for increased investment.
The most recent EU-funded research on PCOS concluded in 2020. Emelyne Heluin, Vice President of the French Association for Women Diagnosed with PCOS (SOPK Europe), criticized the inadequate funding for PCOS research. “There is a significant gap in research funding for PCOS,” Heluin noted. Jodie Relf, a PCOS dietitian and spokesperson for the British Dietetic Association, echoed this sentiment, emphasizing the need for comprehensive research to better understand the condition.
PCOS is associated with a range of symptoms including irregular menstrual cycles, fertility issues, excessive body hair, weight gain, and acne. It also increases the risk of developing serious health conditions such as type 2 diabetes, high blood pressure, high cholesterol, heart disease, and endometrial cancer.
Experts argue that women who seek medical help for PCOS often receive inadequate support. Relf highlighted the frustration many patients face when prescribed only weight loss or contraceptive pills without addressing the complexities of managing PCOS. She shared her personal experience of being diagnosed with PCOS in her early twenties, noting a lack of comprehensive information from her healthcare provider.
Heluin, diagnosed at 17, faced similar challenges, having to independently navigate the symptoms and management of the condition. Both women are now advocates for raising awareness and improving support for PCOS patients.
In France, approximately 2.5 million women are affected by PCOS, according to SOPK Europe. A 2016 study revealed that the prevalence of PCOS in Central and Eastern Europe is more than three times higher than in Western countries. The Czech Republic reported the highest rate of PCOS cases per 100,000 women, while Sweden had the lowest.
The European Union’s Horizon 2020 program has funded two significant PCOS research projects to date. One of these, SPIOMET4HEALTH, aims to develop a single daily tablet to normalize ovulation and endocrine-metabolic status. This five-year project, which will undergo clinical trials in various European countries, including Spain, Austria, Norway, Italy, Denmark, and Turkey, represents a hopeful advancement for future treatment.
Heluin, who is involved in the SPIOMET4HEALTH patient advisory board, expresses optimism about the project’s potential to benefit future generations.
However, there is ongoing debate about whether current research focuses too narrowly on fertility and weight issues. Studies indicate that around 40% of women with PCOS experience depression or anxiety, which are often exacerbated by the syndrome’s physical symptoms, such as hirsutism and acne. Fatigue and sleep disturbances are also common.
Heluin describes the profound impact of PCOS on her life, including its effects on her social interactions, career, and overall well-being. She argues that societal perceptions and the focus on weight management fail to address the broader challenges faced by PCOS patients.
“We need to challenge the notion that improving lifestyle and diet will cure PCOS,” Heluin asserted. “While these measures might alleviate some symptoms, they will not eradicate the condition. Weight loss is not a cure-all for PCOS.”
The call for more inclusive research and comprehensive support for PCOS patients continues to grow, highlighting the need for greater awareness and investment in this prevalent yet often misunderstood condition.
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