PCOS & You - Navigating the minefield

So, the algorithm is algorithm-ing. Ever since I started hinting at my PCOS journey on my Instagram and following a few specialists, dieticians and real people with PCOS, I've been bombarded with all sorts of reels, sponsored posts, recipes and remedies. And one of the most frequent topics I've seen is the discussion around PCOS types where people are being told to identify their PCOS type based on their answers to a series of simple questions. And while I typically err on the side of informed opinions and established facts, of course I clicked. Yes, I fell for the algorithm and inadvertently enriched it with that one move. I swiped, and selected options…. And was told something I already know – my PCOS type. Did I expect any less? Perhaps not. But the basic premise for such quizzes is that first you know your body. How else are you supposed to be able to answer those questions like what gut problems you've had, your energy levels, cravings, stress responses, etc.

And as I navigated this path up till today, this part was what took the longest time – knowing my body; understanding how it normally functions or should function, and identifying deviations from that norm. I learned that the main areas assessed when looking into the possible occurrence of PCOS are fertility and reproductive health, metabolic health and psychological health. I did tick all 3 of those boxes at different speeds and to varying levels of severity as I started to realise that there was a problem to be looked into. But I can hear the question in your head. For someone who has had PCOS symptoms for as long as you've known yourself, what even is normal? That's a very good question and one I asked myself quite often. And here's how I answered it:

I defined normal. This was probably the hardest part and to make it make sense, I focused on predictability. I discovered that nothing about my body's reactions was predictable; not my cycle (my health app algorithm is the only one that has probably given up on me), not my skin, or my gut, not the places where hair was growing nor the places where it wasn't, not my moods or stress levels. And I decided that my north star was to get at least 2 of these things to a place where they were predictable. So, I did the next, and in my opinion the most important thing because surprise surprise, PCOS cannot be diagnosed by symptoms alone!

I got tested. Oh did I get tested. Pelvic exams, the most extensive blood work I'd ever done up till then, glucose tolerance tests, ultrasound scans, lots and lots of conversations. I read up about hormones, how they are they are generated, what they do, my glands and how they respond. I learnt about connections between my brain and the physical symptoms I see. A lot of the whys were answered, or at least acknowledged. And this was not one or two tests. I had a few false starts with some doctors that simply weren't a good fit. So by all means, do the quizzes if you need to scratch the itch like I did, but remember it's not an authoritative source of what you need to tackle, and how can you tackle anything without being confident in the xs and ys of what it really is? Looking through the various markers of this syndrome and how seemingly random they appear can be discouraging. But for me, the key was open conversation. I went to doctors’ appointments armed with questions, observations and a heart ready to learn. I didn’t take blanket statements at face value. “Yes that’s great but based on the numbers in my blood work, what does this mean for ME?” I didn’t have to ask this but my questions implied it, and made the conversations even deeper. (I’ve added some resources at the end of this post on recommended screens for PCOS testing which you can request from your healthcare provider)

Make no mistake, after we established 13 years ago that I had PCOS, I didn't jump into action. I focused on the motherhood bit (story for another year) and only after our second child was born did I invest the time into figuring things out and making a long-term plan. Granted, the pregnancies had provided hints as to what PCOS type I had, mainly because I had dealt with gestational diabetes. And that gave me a clue to expect that it would manifest itself as an insulin-resistant-shaped thing. Still, I had to do the work. I had to commit to doing my best; and I wish I could tell you it has been smooth sailing. It hasn't. But there has been movement.

I refuse to make generic statements about PCOS and if you think you may have symptoms or have been told that you have PCOS, all I'm here to do is to help you figure out what PCOS means FOR YOU. Anyone who knows, knows how annoying it is to hear those 'go on a diet', 'sleep better' statements. Or worse still, the random recommendations of untested supplements and medication with ridiculous side effects that make you wonder what you're even treating in the first place, and if it’s worth it. But I think that the first step to being in a position to do anything about PCOS is understanding what this syndrome means for you, what needs to be addressed (in order of priority because those issues and effects can be a lot!)

And I will say, despite the ups and downs, being in control, simply knowing, being able to predict even if what you're predicting is the unpredictability; this gives you so much power! And once that's out of the way, all that's left is figuring out your new lifestyle and doing something about it! And isn't that just wonderful? Doesn’t it feel more conquerable now? It did for me!