By Keiko Zoll
Wear teal for me. And my five million sisters – cysters, we call them ‘round these parts – living with Polycystic Ovarian Syndrome in the United States.
Polycystic Ovarian Syndrome (PCOS) is much like infertility and in fact – one of the many causes of infertility – in that it is silent, stealthy and widespread, only making curious hints of its presence in small signs and symptoms that many women never question. I was one of them.
It wasn’t until one of these cysts ruptured that I received my PCOS diagnosis in the first place, but the signs had been there for years: irregular periods that became increasingly like cameo appearances than regular occurrences; acne that wouldn’t quit no matter how many different ointments and creams I tried; the gradual weight gain that was in stark contrast to my active lifestyle; and a looming, ever-present and near-crippling depression.
It wasn’t until that August afternoon when I was eighteen – the summer before college – when the nausea and back pain I had felt all morning came to a shatteringly, gut-wrenching peak that sent me to the emergency room. There, I learned that one of my ovaries was covered in cysts. The other was obscured by the fluid from the cyst that had ruptured on that ovary, the source of my pain.
In this instance, as graphic as this description might be, I don’t believe in TMI, because I believe there is TLI – Too Little Information – about PCOS for young women.
PCOS affects as many as 1 in 5 women in America. It is widely considered to be one of the most under-diagnosed endocrine disorders next to thyroid disease in women (and yes, I have that too, and was diagnosed much later in life after years of symptoms). And while PCOS can be a major player in female-factor infertility, PCOS carries with it lifelong health concerns well beyond the child-bearing years.
Some are cosmetic; women with PCOS struggle with weight gain, excessive facial hair, acne and even male-pattern baldness or thinning hair. Effective management of PCOS requires a more attentive lifestyle in terms of diet and exercise, given that PCOS can affect a woman’s insulin resistance and can cause high blood pressure.
I was just a wide-eyed eighteen-year old when I was diagnosed and took my doctor’s advice to simply begin the birth control pill – and that was it. I never really followed up with it beyond that, assuming the pill would magically take care of it all. It didn’t, and in December of that same year, I lost my left ovary to an ovarian torsion as the result of one of my cysts filling with fluid and growing to a massive size. Even then, I received little more than a pat on the head and told to remain on the pill. Unfortunately, the pill masked another condition that was brewing undetected for nearly a decade that has led me to my current infertility diagnosis.
I wish I had been more aggressive with my doctors back then. I wish I had the power of the internet as it exists now back then, too, to be a more informed patient who could advocate for herself. I wish I knew more about PCOS then.
That’s why I talk about PCOS now, hoping to reach at least 1 in 5 women to empower them to advocate for themselves in their doctors’ offices, so that if they do become part of the statistic, at least they know there are options out there for lifelong wellbeing and management with PCOS.
This September, for PCOS Awareness Month, wear teal for me.
And my five million cysters.
Keiko Zoll is an infertility and women’s health writer. She blogs at TheInfertilityVoice.com and you can read her Voices of PCOS Series all month long here. Find her on Facebook or follow her on Twitter @KeikoZoll.