I was invited to write down some thoughts on the process of being diagnosed with Polycystic Ovarian Syndrome by the director of an online community based around treating and living with PCOS. The Cysterhood features meal plans, courses, advice, and information about how to adjust your lifestyle to better treat your PCOS.
The post below originally appeared on The Cysternood in October 2019:
Before Diagnosis Since high school I’d very slowly but steadily been gaining weight, going up a dress size every two years. I (and I suppose everyone else too) had assumed that my lifestyle as a young adult was contributing to this – going out to nightclubs, drinking, and having delicious hangover-curing breakfasts must have been it!
The first thing I did was sign up for a gym membership, and boy did I commit! I attended at least 6 days a week for at least an hour or more and followed my programme religiously. I alternated between cardio and strength training in an attempt to boost muscle and my metabolism, gain strength, and lose weight. It worked a little, and I was thrilled with the compliments as people started noticing the changes, but it didn’t take long until things began to plateau. My gym adjusted my personalised plan to try and assist, but weight was still not shifting. Trips to my doctor to ask for help revolved mainly around my diet, which honestly was pretty sensible – I’m not sure if the doctors believed me though, so I obliged their request to complete a food diary to show them what I was eating. The main feedback I received was that I needed to eat more fruit – studies done on lab rats have apparently shown that when rats are given largely the same diet, with the only difference between two groups being a lack of fruit, the rats eating fruit are much more likely to lose weight. So, off I went, eating more fruit, working hard every day at the gym, and still nothing.
I don’t need to tell my PCOS cysters how frustrating this was. On the one hand, I felt pretty good, being strong and fit (but still overweight), but it was demoralising to be pouring all my time and money into strategies that were just not working for me. After a while I could no longer afford the gym, and promised myself I’d keep the workouts up at home.
I began thinking that perhaps my hormones had something to do with this – I’d been on The Pill since I was a teenager.. was the pill making me overweight? Perhaps it had something to do with my lack of sex drive and tendency towards feeling depressed too? I was hoping this would be the single solution I needed to fix my entire life (ha), so my doctor inserted an Implanon to see if it would help.
The Implanon didn’t make things terrible, but it didn’t help either. I ended up having it removed, and began considering options like a copper coil, or IUD. A sexual health doctor recommended that we wait until I get my first “real” period to see how heavy it would be, before we decide which option to go with. Without this recommendation, I would never have been diagnosed with PCOS.
Diagnosis The period never came. I can’t recall exact dates now, but after maybe 6 months, I returned to the doctor to report back, and finally.. finally a medical professional wondered aloud if perhaps I had PCOS. After roughly five years of being told the polite equivalent of “have you tried putting down the fork?” or “maybe you’re not performing your own gym plan correctly”, this entirely plausible solution was laid out on the table. Why had it taken so long? Was it really so hard to believe that I was following all these doctors’ orders?
I felt I should have been excited (at least a little) to finally have a potential answer to my problems, but it was hard to feel positive when suddenly I had to consider that I may actually have a medical condition I’d not even know about before. There’s just something about being told you might have a “thing” that throws you a little bit. Being told I needed an ultrasound, when I was so young and not even trying for a baby made me feel strange and brought up insecurities about my own femininity. Now imagine my delight when I found out that apparently there was a such thing as an internal ultrasound! Boy that was a memorable day. My journey was becoming uncomfortable and lonely. I had no idea what to expect, and I felt that my womanhood was somehow “off”, and couldn’t help but mourn the thousands of dollars of apparently wasted gym memberships over the years.
At 25 years old, after a ~$300, 8 minute, specialist appointment, where I was advised to eat a Mediterranean diet, and consider at least trying for kids before I turned 30, I was forced to reassess things. I had always operated on the assumption that I had plenty of time to think about having kids, that I was young and in no rush. Suddenly, I felt under pressure to breed within five years (my car was only five years old and I still called it “new”), and I didn’t feel so young and carefree anymore. I turned (metaphorically) to look at my partner at the time, and I think deep down (very.. very deep) a part of me finally admitted to myself that my high school sweetheart was not the man I wanted to have children with.
Divorce Nothing distracts you from a fresh PCOS diagnosis like a year of self-discovery, soul-searching, and eventually divorce. Being freshly single and on Metformin helped a lot at first, and I lost weight quickly, but of course that plateaued too after a while. I love and always have loved curvy bodies, and am proud to be a plus sized babe, but I had a painful relationship with my body because as beautiful as it was, I felt it was not at all under my control.
As much as I tried to avoid thinking about my looming “baby deadline”, and tried being generally healthy, it wasn’t until I understood just how common PCOS was that I started to relax, and consider that maybe being healthy and in control of my body really was an achievable goal. I was given an invaluable book: 8 Steps to Reverse Your PCOS by Fiona McCulloch, which laid it all out on the table and explained just what was going on in my body and the different factors I would have to manage in order to control my PCOS. I must have googled a few things from it, because suddenly The Cysterhood images were appearing as sponsored posts in my Instagram feed. At first I followed just to normalise the condition in my daily feed/life/thoughts, and maybe pick up some handy tips, but what I’ve really discovered is thousands of women who share the same worries, frustrations, hopes and goals as I do. I’ve never felt so empowered to make actual changes in my life. I snub standard weight-loss or lifestyle blogs or Instagram profiles as I help myself to delicious good fats and proteins. When a calorie counting app tells me to lay off the smoked salmon, or eat more fruit I tell it where to go.
The journey is definitely not over yet. I’ve been seeing a fertility specialist, and at the moment my main goal is (drum roll…) to lose weight (ugh). It’s happening slowly, and whilst I may still look the same to some others, I feel different. I notice changes in how my clothes fit and in my mood. Whereas I used to feel tired and moody all the time, I usually have more energy these days and when I start to feel that drop, I know it’s linked to my blood sugar and insulin resistance, and can give my body what it needs to feel better (i.e., not fruit). That makes me feel more in touch with (and in control of) my body than I’ve ever felt before.
I’ve always felt entirely out of touch with my body – especially the reproduction bits – I didn’t notice PMS symptoms because I was always bloated and upset, so how could I tell the difference? There’s a lot more about my PCOS I need to manage, but after all this time, disappointment, and the fear of having “a condition”, I’ve found that embracing it and changing my lifestyle to manage it has given me a sense of hope and control that ignoring and avoiding it never did. Far from being inconvenient and difficult, the changes to my diet and exercise habits have now been taken onboard in our house and my partner now (a chef, who is constantly amazed at the huge improvement in the quality of gluten-free ingredients in recent years) is finding it easier to improve his own health too. I’m only 18 months away from that “deadline” of turning 30, which terrified me so much when I was 25 and freshly diagnosed, but I’ve never felt so ready for it. Bring it on.