I have a story I’d like to tell.
I have PCOS (Polycystic Ovarian Syndrome).
Until recently, there didn’t seem to be a reason to talk about it. But now I feel passionately that I want to tell my story so I can help others with PCOS feel like they have a different option besides the typical PCOS recommendations to 1) lose weight or prevent weight gain, 2) take birth control, and 3) take metformin.
Please note that this is just my story. Nothing in here is to be taken as individual medical advice.
So, let’s start at the beginning. I never had very regular cycles. In fact, they disappeared for several months off and on when I wasn’t eating enough due to my disordered eating in high school and early college years.
My doctor also discovered I had a pretty significant vitamin D deficiency my senior year of high school. When I started taking a vitamin D supplement, I began having a period at least every other month.
I then started birth control at age 19 and thought, “Great, now my cycles are regular! I’m having a period every month!”
What I didn’t know at the time was that a “period” on the pill isn’t a real period; it’s just a withdrawal bleed.
Eventually, after my husband and I had been married for a few years and we started talking about having kids, I decided I wanted to stop the pill. I just wanted to see how my body did without it, but I wasn’t ready to get pregnant yet.
But it was like my body was stuck. I had nothing resembling a cycle. I did have all kinds of frustrating symptoms like cramps, constant spotting, feeling depressed, pimples, and more.
After 2-3 months of this I saw an endocrinologist. She did some lab work and ordered an ultrasound. A few days later I got a call from my pharmacy saying my metformin was ready for pick-up. Being a dietitian, I knew that metformin was a diabetes drug. I panicked.
I knew that I often felt like I got hungry really fast or couldn’t go as long without food as some of my friends and sometimes I even passed out. I thought, was this because I had diabetes all along???
I called my doctor and they told me that no, I didn’t have diabetes but that I had been diagnosed with Polycystic Ovarian Syndrome.
PCOS is a hormonal disorder that doesn’t have a known cause, but is attributed to genetics and environmental factors. It can have long-term complications like diabetes and heart disease. It can also increase your risk of infertility, miscarriage, gestational diabetes, and depression and anxiety. You are diagnosed when you have at least two of the following: 1) irregular periods (or confirmed lack of ovulation or inconsistent ovulation), 2) higher than normal levels of male hormones, and 3) cysts on your ovaries.
The nurse on the phone said my testosterone was a little high and the ultrasound found several cysts. They told me that metformin was prescribed because it can be helpful for getting people with PCOS to ovulate and deals with the insulin resistance that most people with PCOS face.
Insulin resistance is when your body doesn’t respond well to the hormone insulin, which is the key that unlocks your cells to let the sugar from your blood be used as energy. It is a condition linked to pre-diabetes and type 2 diabetes.
So I picked up the prescription and slowly increased the dose as instructed.
Every time I had a drink I was worried I was ruining my kidneys. No one ever went over how much I could safely enjoy. I remember stopping taking it a few days before Valentine’s Day so it would be completely out of my system so I could enjoy some wine with my husband on our night out.
And the heartburn was unreal. The first time it happened I was getting ready for work in the morning. I leaned over to throw something away and thought I was having a heart attack. Then I thought I was going to throw up. Then I remembered that heartburn was a possible side effect of metformin and realized that’s what was going on.
I tolerated this for a couple months and nothing had changed in my PCOS symptoms. So I saw an OBGYN. She was very understanding and told me that metformin can be hard! She asked if I wanted to get pregnant. I said, “Not right now.” So she recommended I stop the metformin and go back on birth control to manage the other symptoms I was dealing with.
Something else she said stuck with me…
She said that that if I weighed X more pounds, that I would probably have diabetes because of my PCOS.
I’m not disclosing the actual number she said because I don’t want to trigger anyone. But it’s not that much. Less than the normal amount gained during pregnancy.
So I left that appointment thinking that all I had to do was go back on birth control, plan on needing fertility treatment whenever I wanted to get pregnant, and not gain weight.
This was before I knew about intuitive eating. So I thought…not gain weight? Of course I can do that. I’m a dietitian! In fact, I’ll lose some weight!
But I couldn’t. No matter how much I restricted, my weight just wouldn’t budge like it did before. I felt like a failure as a dietitian.
I wish I could remember exactly how I first learned about intuitive eating. But something possessed me to read the book. And the rest is history.
I learned how dieting sets our bodies up to dig in their heels and make it harder and harder to lose weight (and having the hormone complications from PCOS makes it even that much harder!).
But more importantly, I became exposed to a whole anti-diet, Health At Every Size world out there telling us that we don’t have to diet!! That smaller bodies aren’t necessarily more healthy and larger bodies aren’t necessarily less healthy! That we don’t have to count calories and order salads to eat right! And that this rejection of diet mentality is actually evidence-based to improve your health and is NOT just some hocus-pocus woo-woo!
I started out by testing not counting calories and not weighing myself. I remember doing that for a few months and then one day talking about it with a friend and saying how scary but freeing it was and that I hadn’t really noticed a difference in my body size.
I poured all my time into educating myself so I could incorporate intuitive eating into my growing private practice.
About a year after starting my journey of eating intuitively, my husband and I decided we were ready to start trying to have a baby.
At the same time I stopped the pill, I made a few other non-diet lifestyle changes, like cutting back on endurance exercise, slowly switching out my cleaning products and toiletries to brands with less chemicals, reducing my exposure to food that had come in contact with plastic by switching out my food storage containers, and taking a few supplements recommended for people with PCOS.
Slowly my cycles become more and more regular until on February 1, 2019 I took a pregnancy test…and it was positive. This was 13 months after I had stopped the pill. 9 months later I had my little boy.
If I had never rejected the diet mentality and tuned into my body through intuitive eating, I would probably still be counting calories, deathly afraid of the idea that if I don’t do everything right to prevent weight gain that I would end up with diabetes and it would all be my fault.
I may still develop diabetes. But I know now that that is because diabetes (and weight gain for that matter) are two possible outcomes from PCOS that can happen regardless of what you eat. And the tools that intuitive eating has given me to navigate and manage my PCOS will help me navigate that as well.
Want to know the crazy part? PCOS affects 1 in 10 women of childbearing age. And yet until I did my own research and education, I felt like I was a medical anomaly with no options. Our healthcare system is just not equipped to care adequately for people with PCOS yet.
I know that every PCOS story is unique. That’s part of what can make it feel so isolating! There are different types of PCOS and different symptoms manifest in different people. But I know that for me and many others out there, focusing on my weight was actually holding me back from full health.
Thank you for reading my story! It really means a lot. Do you have PCOS? You might be interested in one of the following:
-My PCOS + Intuitive Eating Program, a 12-week holistic approach to transforming your PCOS without dieting. Registration is opening soon for us to start in January 2021! You can hop on the waitlist or read more about it here.
-My free PCOS Peace Guidebook
Thanks for reading!