International Women’s Day is a week away, and one issue that’s not often discussed around this time involves PCOS or Polycystic Ovary Syndrome, which can be misunderstood and misdiagnosed. Many women are often told that irregular periods are not a big concern. Some women have few symptoms, others may have many but those can well be mistaken as signs of other health conditions. How big is the issue? What can be done?
Apple obviously has a significant reach globally. The reach of Apple’s iPhones, Watch and the Health app encouraged Harvard T.H. Chan School of Public Health (also the National Institute of Environmental Health Sciences) — in 2019 — to announce a women’s health study, which was an important moment (like the Nurses’ Health Study that began in 1976). What we now have is the first-of-its-kind Apple Women’s Health Study, which was announced on February 28. And it sheds light on gynecologic diseases like PCOS and infertility and how demographic and lifestyle factors impact these, using iPhone and Apple Watch.
Participants contributing data to this study update were those who enrolled from the start of the study in November 2019 through December 2021. More than 37,000 participants completed the Medical History survey at least once and answered questions about gynecological conditions, family medical history, and heart health. Of the participants that completed the Medical History survey, approximately 30,000 also completed the Reproductive History survey and answered questions about their menstrual cycle over time.
Periods are different for everyone and it can change month to month but changes to one’s period that last several months or are very different than the typical period can be a sign that something may not be normal.
Signs of abnormal menstrual cycles — and these need to be diagonised by a doctor — include period lasting more than 10 days, period flows that are heavy enough to impact daily routine, time between periods is less than 24 days or more than 38 days, missing a period and spotting or bleeding frequently in between periods.
Diagnosis is important because PCOS has been associated with infertility and can lead to increased risk for diseases like diabetes, high blood pressure and obesity, all of which can have significant impacts on overall health and wellness.
“Despite the association between PCOS and heart-related conditions, historically, research studies about heart health have not included information about menstrual cycles. More broadly speaking, menstrual health is also significantly under-represented in the research space. Our study is filling a research gap by diving deeper into understanding how periods and menstrual cycles can be a window into overall health,” says co-principal investigator of the study Dr Shruthi Mahalingaiah, an assistant professor of environmental, reproductive, and women’s health at the Harvard T.H. Chan School of Public Health.
The findings
A preliminary analysis of a cohort of Apple Women’s Health Study participants shows that 12 per cent of study participants reported a PCOS diagnosis. Participants with PCOS were diagnosed between ages 14 and 35, with a median age of 22 years old. It typically takes a few years and several visits to the doctor’s office from the time one first develops symptoms of PCOS to a confirmed diagnosis. As a youngster, talking about menstrual cycle and irregularities, especially over the course of multiple years, may not feel like an important thing to do with a physician or health care provider. That needs to change.
Sooner conversations begin, doctors will be in a better position to guide. It’s not completely clear what causes PCOS, but research has identified a few key risk factors. Family history is one of those risk factors, and what that means is that someone who has a mother or a sister who has a diagnosis of PCOS may also be more likely to have PCOS. The study shows that 23 per cent of participants with PCOS also had family history of PCOS.
Participants with PCOS were more likely to have unpredictable menstrual cycles after menarche (first period). More than 70 per cent of participants without PCOS reported that their menstrual cycles became regular within four years of their first period. In comparison, only 43 per cent of participants with PCOS reported that their cycles become regular during the same time frame. Almost half, 49 per cent, of the participants that reported a diagnosis of PCOS never had regular menstrual cycles or achieved regularity only after using hormones. In comparison, only 22 per cent of participants without a diagnosis of PCOS never had regular menstrual cycles or achieved regularity using hormones.
Why does all this matter? Many think of PCOS as a disease that just affects menstruation. But, it has important implications for heart and circulatory health. Participants with PCOS are four times more likely to have pre-diabetic conditions, three times more likely to have Type 2 diabetes and almost two times more likely to have high blood pressure and high cholesterol. Irregular heartbeat or arrhythmia was more common among participants with PCOS (5.6 per cent) than participants without PCOS (3.7 per cent).
Tracking periods can lead to diagnosis and prevention of some unwanted effects of the disease. For example, the cycle tracking feature on the iPhone and Apple Watch can be helpful in accurately tracking periods and symptoms may help your doctor make important diagnoses. Like all health data, cycle tracking data is encrypted and only accessible with the user’s passcode, Touch ID, or Face ID.
