My PCOS Story & What I Wish I Knew 4 Years Ago
PCOS stands for polycystic ovarian syndrome and someone you know very likely has it. It’s estimated to affect 1 in 10 women across the world, and to be the culprit in 90% of women with irregular menstrual cycles.
Because PCOS is a syndrome, or a collection of symptoms, one woman’s PCOS may look very different from another’s. I’m going to tell you about mine and what I wish I knew 4 years ago, where this story begins.
I thank you for allowing me to share with you.
My beginnings
It began with melasma, often called the “pregnancy mask.” The name comes from hormone fluctuations during pregnancy that can cause hyperpigmentation, especially on areas exposed to sunlight. For me, this meant an embarrassing dark upper lip and cheekbones. Melasma can also be triggered by hormonal birth control, as was the case for me. So, I switched birth control and tried to protect my skin from the sun. Not only did the patches continue to darken, and suddenly I had acne. It progressed slowly, then it was fierce and wrecked my self-confidence. For 6 months I saw a naturopathic doctor, underwent blood testing and a comprehensive elimination diet, took supplements, worked with an esthetician and overhauled my skincare and saw an Ayurvedic practitioner. Nothing helped. Though, I gained a deep sense of awareness of my body and the clarity to pivot. I removed my IUD to free all influence from outside hormones.
Contrary to all my expectations and hopes, this is where my skin took a nosedive off a cliff. At this point, I was deep in research combined with personal symptom tracking, diet tracking, and a drive to discover a pattern. I learned and I watched for over 2 years. I noticed the thick hair I once had was now so thin I could hold a ponytail with just a few bobby pins. I noticed no discernible link between what I was eating and my skin. And every day passed still without a period.
A new approach
I wanted an ultrasound and blood tests done to test for possible PCOS. I was in Argentina at the time, and got an appointment with a gynecologist who I had hoped would order tests, or at least have recommendations for me. Here I was, just reading books and scientific studies in my spare time – surely a medical professional would know what to do! This doctor agreed that I likely had PCOS and that a hormonal birth control prescription would solve everything. Intuitively and academically, I knew this logic was flawed. How would a dose of synthetic hormones (which suppress ovulation and trigger a breakthrough bleed) “regulate” my menstrual cycle? They don’t. She was adamant; If I wanted to see blood, I’d see blood with the pill. If I wanted clear skin, the pill could give me that, too. If I didn’t agree, I could leave. When I asked what she would recommend for someone with PCOS who wants to conceive, she shrugged, there’s another pill for that. I was flabbergasted.
Little did I know how common this conversation is. Not all doctors are ready to prescribe hormonal birth control at the first uttering of PCOS, acne, or period problems, but it’s still frighteningly common.
I was so puffed up from this conversation, I could have flown away on fumes. As it turned out, this dead end was the best thing that could have happened. It lit a fire to deepen my investigation into the link between diet and lifestyle and PCOS. I knew I needed to be the one to help women like myself. There is another way for those who are feeling hopeless, abandoned by conventional approaches, and spiraling with physical symptoms that dovetail with self-doubt, anxiety and depression.
What I wish I had known then
The root cause of PCOS is in blood sugar imbalance and insulin resistance, stress and/or inflammation with a bit of genetics mixed in. It’s a messy web, and once you’re in it, it’s a vicious cycle. As you can imagine, the picture of PCOS can look very different based on a woman’s root cause and presenting symptoms. With all of the different permutations, I wish I had had guidance on what to focus on, what to do about it and how to implement it.
I advocated for myself to get the testing I needed to determine if my symptoms were PCOS or something else. According to the Rotterdam Criteria which systematized the PCOS diagnosis, a woman must meet 2 of the 3 criteria:
amenorrhea or irregular menstrual cycles at less than 10 per year
polycystic ovaries (greater than 12 at 2-9 mm or a volume > 10 mL)
excess androgens
After completing my studies in nutrition at Bauman College, and devoting the better part of 4 years studying hormonal health through diet and lifestyle approaches, I recognize that my earliest trial and error efforts were good-intentioned but misguided. If I could go back in time, I’d tell myself:
Blood sugar balance is critical. Rather than focusing on logging every ingredient I ate in order to spot a culpable food trigger, I would have focused on how I was eating, when I was eating and the overall composition of what I was eating. Regaining blood sugar balance is possible with diet and lifestyle, and it is not as simple as a low carb diet.
Stress is not always one acute incident or one singular trigger. I was stressed about the symptoms and about a life transition. I was exposed to significant air pollution and environmental toxins. I ate a “healthy” diet yet was unaware of nutritional deficiencies. I was also stressed with perfectionism and achievement, and had unresolved emotions. Management of my total load of stress must acknowledge the vast contributors and must involve a combination of emotional, nutritional and lifestyle work.
“Nurturing” is a better mindset than “fixing” me. I considered my dedicated efforts at healing as solutions, so when I didn’t see progress, they became a mountain of failures. This repeated failure did emotional damage and regressed my healing. Instead, I wish I had cultivated a mindset of patience and self-acceptance. Both are essential, underrated and take time to cultivate.
There is hope!
Finally, after 8 years without a natural menstrual cycle, I was blessed with a natural period in November 2018. With a shift in mindset and informed strategies to work smarter rather than harder, my original symptoms have mostly receded into worries of the past. My cycle is back, but still isn’t like clockwork, and with a year like 2020, my symptoms come and go. They remind me there is still work to be done and the road towards balance isn’t always smooth or arrow-straight.
The specifics of what has worked for me will most certainly not work for every woman struggling with PCOS, hormone imbalances or acne. However, my approach of getting to the root cause and shifting my eating and lifestyle habits with patience and acceptance can work for you, too!
If you're curious about how this could work for you, let's talk.
