Who named my ovaries “Polly” and why do they have a “Cis Stick”?

The questions our bodies can answer about Polycystic Ovarian Syndrome (PCOS).

When the jaws of lockdown finally broke open in October last year, so too did the hiatus almost all my friendships had taken. Huddled in a corner of a recently reopened Newtown bar, my girlfriends and I unpacked all the gossip and going-ons we had missed out on reckoning with together. With a rockmelon-tequila cocktail in one hand, and a lemon meringue cider in the other, I divulged the fourteen-day periods that had recently flooded my now-twenty-one-day cycles. 

In other words: I had only stopped bleeding for one week every month, for the past five months. 

“It sounds like PCOS,” one of my friends commented as she picked at the fries we ordered. Of course, I knew what Polycystic Ovarian Syndrome was. A forever-popular topic of discussion at the single-sex high school I attended, I’d come of age with an awareness of menstrual diversity. However, I had not considered it an explanation for the swift, stubborn attack my uterus had suddenly launched. Recently having been diagnosed herself, my friend explained her treatment and subsequent feelings of regained control. Albeit different from my own, her journey made me ponder: could PCOS be my culprit? 

Three months later – after four visits to the GP, two blood tests, and a complete ultrasound – my gynaecologist concluded that my hormone levels showed spikes in testosterone, while my internal scans depicted polycystic ovaries. So that settles it. The name is matched to the face. I have more to predict my bleeding patterns than ‘anovulatory cycles’ and luck. 

I would be lying if I said I was surprised. Confused, maybe. Definitely still reeling from the jolt of forfeiting heavy – yet healthy – cycles for this ‘new normal’. But I was not surprised. I’d recognised plenty of puzzling signs throughout puberty. Why did I have so much black and brown body hair covering my neck, torso, and legs if I’m blonde? Why was my acne so bad, given that my brother hardly had any? Were my increasingly erratic mood swings a result of stress and a lack of sleep, or was something deeper at fault? 

In response, my mother had often reassured me that she had the same symptoms, just like her mother and her mother’s mother. Yet while researching, I learned that while these signs may run in the family, they are most characteristic among the 8 per cent to 13 per cent of all women of child-bearing age who live with PCOS. 

Initial panic set in. Despite the bonus of contraception, I quickly realised that any treatment would only mask the underlying problem. The structure of my ovaries cannot be changed; although they do not contain cysts in the way the name ‘polycystic ovarian syndrome’ suggests, they are enlarged and composed of follicles. They produce excess insulin and androgens (male hormones) in my body, both of which can be controlled but never remedied by existing treatments. Due to a lack of understanding about the causes of PCOS, I am, like many women, resigned to living with its long-term threats of type two diabetes, weight fluctuations, cardiovascular disease, and mental illnesses. 

While PCOS can resolve itself over time, I worried about what the rest of my life might look like with insulin resistance and infertility triggered by my pockmarked ovaries inhibiting eggs from maturation. If it made me less of a woman to have to fill in the gaps my body had left me. What it might mean if I could not.

Yet, as I discuss PCOS more and more with people, my stress has gradually pivoted towards relief. 

Iron deficient and emotionally exhausted, I am prepared to manage my symptoms. Between the oral contraceptive pill, the IUD, the rod, the ring, and hormone injections, I am spoiled for choice – even if these ‘solutions’ are underfunded and outdated, having been designed to neither detect nor treat PCOS. 

Most people I know have tried at least one of these approaches, their anecdotes flooding back to me as I contemplate what might work best. We have come a long way, but the compromise of severe side effects, including migraines, depression, and irritable bowel syndrome, remain a looming testament to the taboos which continuously shroud female reproductive health. Nonetheless, I now feel less like an outlier and more like a modern woman pragmatically considering her options. 

Perhaps the most memorable phrase uttered across the dimly lit bar on that unusually chilly spring evening was: “I get that too”. Four simple words that validated my experiences and strengthened my friendships; that were weighted with such solidarity that, when combined with the medical care and support I have received so far, overwhelmed me with gratitude. 

By no means am I implying that my account should be a point of comparison for suspected cases of PCOS; nor should it replace the advice of medical professionals. 

I only suggest that sharing these stories honestly can extend the warmth of this community to the 70 per cent of women who will go undiagnosed throughout their lifetimes. That, by engaging wholeheartedly in social and scientific spheres, we may learn to read and relate the details of PCOS written so carefully on our bodies. That, over time, this will be made easier because we will not have to go it alone.