My PCOS Wasn’t All In My Head: What I Wish I Knew

After years of symptoms, I was well into my 20s when I diagnosed myself with polycystic ovary syndrome (PCOS). As I began my medical education, I learned how to diagnose PCOS and what my symptoms could mean for my fertility and long-term health. I asked my OB/GYN for an ultrasound, which came back showing I had polycystic-appearing ovaries — one of the criteria for a PCOS diagnosis. I finally had an explanation. It wasn’t just in my head.?

Why PCOS is hard to diagnose

Even in name, PCOS is confusing. People with PCOS don’t always have polycystic-appearing ovaries. To be diagnosed with PCOS, you need to meet two of three criteria: polycystic ovary morphology, irregular or no ovulation (irregular menstrual cycles), and clinical signs or laboratory findings of high androgens (e.g., testosterone). Common physical symptoms include abnormal hair growth and acne.

In junior high, after missing my period for months, I went to my provider and was told that everything was fine. Though my acne wasn’t horrible, it continued into adulthood, and I explained away my extra hair growth as part of being South Asian and having jet-black hair. Because my provider and I both found explanations for my symptoms, I ignored them until I noticed what other women around me were experiencing. They always knew when their periods were coming or where they were in their cycles, their acne subsided with age, and they did not have the same hair growth that I did.

While this experience isn’t unique, PCOS doesn’t present the same way in everyone, making it? difficult to diagnose even though it’s one of the most common causes of female infertility — affecting 5-20% of reproductive-aged women worldwide, 70% of whom remain undiagnosed.?

The problem with not diagnosing PCOS early

Irregular menstrual cycles are normal for the first few years after menarche (when someone has their first period), and young people often take oral contraceptive pills for cycle regulation and sometimes continue on them as a form of birth control for years.?

When they discontinue the birth control, people with PCOS experience irregular cycles, which contributes to 80% of anovulatory infertility cases (i.e., involving the absence of ovulation, meaning there are no eggs to fertilize during their cycles). This can make it incredibly difficult to track ovulation, and as a result, get pregnant or plan a pregnancy. Even though my last period had been two months prior (not unusual for me), I had no idea I was pregnant the first time until I got nauseous at a friend’s wedding. I had to take multiple pregnancy tests to convince myself that I was actually pregnant. ?

An early PCOS diagnosis is also critical for identifying long-term health risks. PCOS is associated with type 2 diabetes, high cholesterol and cardiovascular disease, depression and anxiety, and endometrial cancer. Knowing about these health risks early and receiving treatment can lower the risk of some long-term complications, and give people and their providers a better picture of how to manage lifelong health.

How to recognize PCOS symptoms and advocate for treatment

The CDC estimates that PCOS affects as many as 5 million women of reproductive age in the U.S., but the problems diagnosing it persist. One study showed that women with PCOS reported greater overall distrust of their healthcare providers than women without PCOS, and a study of 296 women in Canada who self-reported PCOS symptoms found that 34% of respondents waited over two years before receiving a diagnosis, and 41% had to see three or more doctors to be properly diagnosed.

Given my medical education, I knew the diagnostic criteria for PCOS and was confident that something wasn’t right. This helped me advocate for a thorough examination instead of being talked out of it again. Providers must approach PCOS symptoms with a full understanding of each patient’s cycle, lifestyle, and family history.?

If a person thinks they may have PCOS, preparing for an appointment with an OB/GYN or a reproductive endocrinology & infertility (REI) specialist is the first step. Although we don’t know exactly what causes PCOS, it can run in families, so gathering a thorough family medical history is useful. A person should also bring in several months’ worth of tracking of their irregular cycles to help with the diagnosis.

If one provider refuses to do a PCOS evaluation, I encourage seeking out a second opinion. My PCOS diagnosis was not only important for my ability to have children, but also gave me the insight I needed to manage my long-term health, including risks of uterine cancer, diabetes, and cardiovascular disease. Because I paid attention to my symptoms, I now have a clearer roadmap for lifelong health, both for my children and myself.