Today, Cystic Sisters, a documentary about women living with PCOS (Polycystic Ovary Syndrome) is released on TVNZ on Demand. Comedian, actor and Great Kiwi Bake Off host Hayley Sproull, the documentary’s presenter, looks back on her experience with the disease.

From as early as I can remember, I’ve always had a moustache. I used to get teased for it when I was a kid and I was super embarrassed. My mum took me to the Caci clinic when I was 11 for a version of lasering that was apparently okay for kids. But it always came back.

Then I got my period when I was 13 and it never settled into a pattern. It was super irregular my whole life – there would be three months in between, then seven months, then no sign of it for a year, then I’d get a couple and it’d be gone again. I spent a lot of my early adult life assuming I was pregnant. I’ve peed on a lot of sticks. A LOT of sticks. Too many sticks.

It wasn’t until I was about 20 that my flatmate Ana said, ‘Dude, I think you have PCOS’. I went and had an internal scan done and there they were – dozens of black circles covering my ovaries.

I have Polycystic Ovarian Syndrome – me and one tenth of all women. And you know what? It can be really shitty sometimes.

After being properly diagnosed, I wasn’t given many answers about why all these things were going wrong with my body. They just put me on the pill and that was it. Meanwhile I was getting fatter, and hairier, my skin was really bad and my hair was falling out.

I thought I was unlucky with that kind of thing but it was getting worse and worse. So I did what everyone having a rough time with their body does – I hit up Google. And what Dr Google told me was that all this shit that was overwhelming my body could all be linked to PCOS. And I was pretty pissed off.

Why wasn’t I told this when I was diagnosed?

Why is the focus of a PCOS diagnosis only around fertility, and not the day to day shit that builds and builds and actually really messes with your life?

And then I was excited. There was the potential that I could learn more about PCOS and maybe that meant I could make it easier to live with. I set off on a journey to arm myself with as much information about PCOS as possible which involved a lot of Googling, a lot of appointments and a terrifying amount of people looking at my vagina. I was still entirely confused, but at least I was doing something which is better than doing nothing, while you’re cleaning wads of hair off the floor and bleaching your sideburns.

Cut to a year and a half ago, when I had just started making some work with TVNZ. I’d also met a whole lot of other friends with PCOS who were just as confused about it all as I was. A lot of the information out there is really daunting and heavy and that’s just not how I digest information.

I wanted to make something that felt fun, that was silly, that could help lighten the heavy burden of PCOS just a bit. I told some of the fine folk at TVNZ about this idea, they got on board with a resounding ‘Yes!’ and followed it up ‘Doesn’t so and so from accounts have that?’

The documentary is a 16 minute collection of interviews with actual experts and fellow PCOS sufferers (We call ourselves Cystic Sisters – and yes I realise that just ‘Cysters’ is far more clever, but it’s too late for that rebrand now, isn’t it?), and follows me around as I try to live my best cystic life. It’s very honest but hopefully very digestible. It isn’t going to give you a magic cure, but it might spark something in you that you want to go and investigate further with your doctor, your friends, or your vagina.

My hope is that someone might watch it and think either ‘hey, I think that’s me’ or even ‘hey, I think that’s my friend’. The whole point of the work is simply to get talking more openly about this thing. On one hand PCOS isn’t that bad, and it’s manageable and it doesn’t have to run your life and you CAN have a baby, and so on and so forth. But, on the other hand women should be told about the increased risk of diabetes, miscarriage and depression that PCOS can cause. Can cause. Not will cause.

That’s the problem: That information should be told to women upon diagnosis, right? And it’s just not. It’s more like ‘let’s get that period going and get you on your way’. Seriously? That’s all the info you’re going to give me? Not getting a period is the best bit about PCOS! Now, if you could just help me with all the other shit, that’d be helpful.

While filming the doco, I was in a really good place with my PCOS. I was managing my symptoms well, I was feeling super on top of it and that made me feel empowered.

But right now, you guys, I’m really struggling. I’m on serious Struggle Street. I’ve gained 10kgs out of nowhere, my skin got so bad I had to go on Accutane, and it feels like I’ve lost half the hair on my head this year. Not to mention my sideburns have finally connected with my chin hairs.

Classic PCOS.

It’s swings and roundabouts with this beast and I’m not going to be embarrassed to talk about it anymore. It’s okay! PCOS doesn’t have to define you and there are a million ways to manage it, just like there are a million ways to remove a moustache. So check out my doco and if you can, come and talk to me or any other Cystic Sister out there. We can sip wine and rip each other’s wax strips off while we collectively share the weight of the PCOS load.

Cystic Sisters is available on TVNZ OnDemand from today. Watch it here.