Polycystic Ovary Syndrome
Despite growing awareness of the condition, around 75% of women with PCOS go undiagnosed.
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I have polycystic ovary syndrome (PCOS). When I was 20, I started experiencing unexplained weight gain, abnormal hair growth on my stomach, and cystic acne, in addition to my already irregular periods. During finals week that year, I endured two days of unbearable pain, later discovering that a cyst on my ovaries had burst. I had the symptoms and suspicions but didn’t know the definite cause. I pursued diagnostic testing through my primary care physician and was informed that I had PCOS later that summer.
PCOS is not easily recognized, leading doctors to misdiagnose it, often confusing it with Cushing’s syndrome or thyroid disease. Up to 75% of women with PCOS go unidentified in clinical practice, leaving them without answers to their health concerns. However, it is one of the most common endocrine disorders.
Many women live with symptoms and seek answers for over two years before receiving a PCOS diagnosis. But I was lucky; I received my diagnosis within two months. After my diagnosis, my OBGYN told me she wasn’t surprised, as she had seen signs since I was 16. However, I was never informed of these concerns until after my diagnosis four years later. I continue to worry that I may develop related health issues from PCOS, such as infertility, if I choose to become pregnant in the future, or insulin resistance and diabetes.
To evaluate trends in PCOS diagnosis, Onchee Yu and colleagues performed a retrospective cohort study of females ages 16-40 enrolled in Kaiser Permanente Washington from 2006 to 2019.
In 2019, at the end of the follow-up period, 5.2% of women had a PCOS diagnosis (nearly double previous estimates). Prevalence was highest among women in their thirties and Hawaiian and Pacific Islanders (red line).
The authors attribute the increase in PCOS diagnoses to greater awareness among clinicians and the public about the condition, especially among women in their 20s. A diagnosis offers reassurance and enables women to identify treatment plans that suit their lifestyle and symptoms. And my experience mirrors the challenges many women encounter when seeking these answers.
With improved estimates of PCOS, and greater patient and clinician awareness, the authors (and I) hope diagnosis delays will decrease, and more effective treatments will emerge.
