Ceraolo: The Ignored Disease

by Julia Ceraolo | 7/30/15 7:53pm

Polycystic Ovary Syndrome, a complex disease that affects the endocrine and reproductive systems, afflicts between 1 in 10 and 1 in 20 women of childbearing age. Despite these high numbers, however, society is failing to raise awareness of this serious issue. This failure damages the happiness and well-being of those with PCOS by making them embarrassed to talk about their condition, while doctors are too specialized in their fields to gain a deeper understanding of it. Although some women are not diagnosed until they try to have children, PCOS often affects women earlier, either in high school or college. In those circumstances, PCOS can have even more profound effect on women’s self-esteem and sense of self-worth.

When I was diagnosed with PCOS at the age of 19, I had never heard of the condition before. I had painful and intractable cystic acne, excess hair on my face and abdomen, some rapid weight gain and irregular periods. Though I have had irregular periods since my early teen years, doctors consistently told me that it was my fault — that I needed to run less or take more control of my weight. In reality, however, my periods seemed to have a mind of their own regardless of what I did. My symptoms could not be explained by body fat or alleviated by fitness, so I knew that something else was going on.

As such, being diagnosed with PCOS in college was, in many ways, a relief — a relief to hear that I had the symptoms of something with a name. The blood work told all. My cholesterol and testosterone levels were disproportionately high for someone with my BMI, sex and age — all signs that pointed to PCOS.

At that time, my brother and I had been taking oral antibiotics to combat acne. These made me nauseous every time I took them but I kept at it for years — a classic case of appearing to treat the problem and not even getting close. It was only later that I, like many others with acne, learned that these antibiotics were inadvisable for long-term health. What I actually needed was hormonal treatment, so a gynecologist prescribed birth control pills to me. A mere five months later, however, another gynecologist said I not only needed a better birth control pill, but also needed spironolactone, a blood pressure medication that flushes out excess androgens. How many other women with PCOS are still taking damaging antibiotics or blaming themselves for their condition rather than getting the treatment they need?

Because of the imbalance between testosterone and estrogen and progesterone in the body, women with PCOS do not regularly ovulate and thus have trouble conceiving. Irregular ovulation also affects insulin levels and makes it difficult for women to lose or maintain their weight. According to a study at the UCLA Medical Center, even thin women with PCOS still have the same metabolic issues, including burning protein rather than fat while they sleep.

Though there seems to be sufficient explanations for this condition, the reality is that scientists still do not know enough. The Atlantic wrote last month that “only a small number of researchers receive funding to study PCOS and most of the money goes toward studying the infertility side of the disorder.” As many women with PCOS know, however, there is much more to deal with besides the risk of infertility. Many also understand that living with PCOS is a high-maintenance existence to even feel healthy and confident with their bodies.

No one should have to wonder why their body is rebelling against them even as they maintain a healthy lifestyle. No woman should, as a Dartmouth alumna told me, feel compelled to use hair removal as a coping mechanism. Some women with PCOS need the pill or spironolactone or even metaformin, which is more typically prescribed for Type 2 Diabetes. Some also need help managing the side effects of these medications, which can include gastric distress. Moreover, many women need help with their mental health, which can suffer as a result of hormonal imbalance and chronic embarrassment about their bodies. Though infertility is important as well, the metabolic side of PCOS is even more relevant to the day-to-day existence of women with this condition, and researchers should dedicate more time to exploring this critical health issue.

This column ran in print on July 31, 2015 under the title "PCOS: The Disease Ignored."