Eleven years after my official diagnosis, I finally came out of the PCOS closet.
It’s one of the bravest decisions I ever made.
What is PCOS? Polycystic Ovarian Syndrome is a complex endocrine (hormonal) disorder that affects women of all ages, causing a litany of debilitating and severe health symptoms. If not properly treated, PCOS is a precursor risk for diabetes, heart disease, obesity and infertility. It also causes a multitude of physical symptoms that can, at best, be described as demoralizing, defeminizing and heart breaking.
Being athletic and healthy, I don’t “fit” the typical PCOS profile. However, I suffered through years of excruciatingly painful periods, with ovarian cysts that often burst unexpectedly. I struggled with fluctuations in my weight, despite adhering to healthy eating guidelines and restrictive calories. Acne routinely blighted my face and body; no amount of medicine or topical treatments could control it. In fact, even now, despite being in the best shape of my life, I still suffer from several PCOS symptoms: hirsutism, hormonal moods swings, hot sweats, insulin resistance and weight fluctuation. It’s a daily struggle…but I’m a survivor.
Living a healthy, active lifestyle is partly why I was not properly diagnosed for nearly twenty years. More accurately, though, was the ignorance and misinformation about PCOS in the medical community. Not once, in all those years, with all the invasive and unnecessary medical procedures I endured, was I ever tested, let alone considered, a PCOS candidate. Par for the course, I was put on birth control to regulate my periods and reduce my acne, yet my other symptoms continued and worsened. I was made to feel like a hypochondriac and I avoided doctors at all costs – not another test, not another disapproving look from an “all-knowing” physician. One gynecologist even suggested I should see a psychiatrist (for a physical symptom!!). Craziness.
There is a silver lining, though. In 2001, on a flight to the United Kingdom, I read an article on PCOS and it was a literal “light bulb moment” for me. I finally knew what my problem was. I immediately researched everything I could find on PCOS, which wasn’t much back then, and implemented extensive lifestyle changes to mitigate my condition. By 2002, suffering from horrific cystic and inflamed acne, and following a harrowing six months of failed Accutane treatment, I approached my local GP. Instead of giving me her “I am the doctor, you are the patient”-type sermon, she actually listened to me as I recounted my current symptoms, medical history and personal diagnosis. She agreed. Within a month, I underwent a battalion of blood, urine and other clinical and diagnostic tests that indisputably confirmed I had PCOS.
Knowing PCOS has no cure, I didn’t know whether to laugh or cry.
But, for the first time in my life, I felt empowered.
So, why did I stay in the closet – only my closest friends and random fellow PCOS sufferers knowing about my condition? There is something so demoralizing, so defeminizing about PCOS that can affect even the strongest of women, making them question their own self-worth. Women suffering from PCOS already feel less feminine, less of a woman – one, because of androgen-driven symptoms, especially hirsutism, that are very masculating and embarrassing; and secondly, because many PCOS sufferers cannot conceive or bring a baby to full term. A less-than-sympathetic medical community compounds this problem and women continue to be routinely ignored, marginalized and misdiagnosed.
It’s amazing how debilitating the cycle of shame can be.
So, in the big scheme of things, my hairy chin and random acne, in reality, are not so awful and something millions of women worldwide face daily. To effectively treat Polycystic Ovarian Syndrome, women – young and old – need to be empowered through knowledge, understanding and compassion. Likewise, introducing both alternative and traditional medical remedies, along with a healthy diet and exercise regimen, will vastly improve the mental and physical well-being of PCOS sufferers.
Women with PCOS often turn to the Internet to find answers not provided through their endocrinologist, gynecologist and nutritionist. Online, as well as published articles and books, often provide conflicting and unhelpful information. In particular, the role of diet and its crucial link to insulin resistance, which has a knock-on effect on hormonal levels. Sources often suggest calorie restriction, GI and Paleo diets, to name a few. From my own experience, none of these plans work. Even a pre-diabetic diet, which aims to regulate blood sugar levels to maintain optimal hormonal balance, is somewhat limiting. The best form of exercise, including duration and intensity, is likewise debatable.
The bottom line is this – one size does not fit all. What works for most women, may not work for a PCOS patient and could cause further complications and frustration. Restrictive diets, in particular, can cause dangerously low blood sugar levels. While some forms of exercise are either ineffective or excessive, while negatively affecting PCOS symptoms and weight control. And, the role of medicine in the treatment of PCOS must be questioned. Unless women are taught how to treat the causes of PCOS, no amount of medicine will ever break the vicious symptomatic cycle.
From a more holistic approach, PCOS must also address other imperative physiological issues, especially the role of endocrine-disruptors, hazardous chemicals present in our food and our environment – not only for current sufferers, but also for the future health of our children. And stress, common-currency in our culture, is far more insidious and detrimental for PCOS than acknowledged.
I’m now 45 and feel incredible. I no longer take medications for my PCOS. I live a healthy lifestyle that balances clean eating with room for indulgence, along with consistent exercise – nothing excessive and, most certainly, not dogmatic in its approach. Reaching this stage in my PCOS journey wasn’t easy, and it often required trial and error, along with a strong dose of sheer will and determination.
I hope my insight will empower and help other women with PCOS to take control of their health, their lives, and, ultimately their overall well-being. I accept the things I cannot change, like daily hair removal, but I also embrace the physiological benefits of a healthy attitude and mindset.
PCOS is not a death sentence; it is an opportunity to change your life, your health for the better. When you feel drawn into that cycle of shame, remember you’re not alone. I lived with that shame for over twenty years…not anymore.
Note: During the following months, I will periodically post PCOS-related articles discussing my various strategies for surviving and, ultimately, thriving without the use of medications. I welcome feedback from other PCOS survivors and health experts. Together we can make a difference and empower each other.