Life with PCOS: It’s not just about periods

The room smelled oddly like my old GCSE Art classroom. Outside, the world hustled and bustled. Inside, people sat in ones and twos, flicking through upmarket magazines, brochures, and books on trying to get pregnant. A portable digital clock in front of me counted down the minutes ’til I had to go back to the nurse to give up another vial of blood.

Unlike my GCSE Art classroom, expensive-looking paintings adorned the walls. Sun shone through the floor-to-ceiling windows. It was an unseasonally warm February morning. The clock bleeped. I stood up and shuffle-clomped to the nurse. I was in my winter boots – the forecast had said rain – she commented I was a little overdressed. I laughed awkwardly with her, mumbled something about these being my only waterproof shoes with grip. Seeing as I was recovering from surgery, I didn’t want to slip on the ice later. Blood done, I wandered back to my spot; digital clock in hand. I put it down and started flipping through a magazine about women and art.

Imposter Syndrome

In the end I spent over 2 and a half hours in that waiting room that day. And honestly, it was weird. I watched as couples came in, nervous, shy, awkward, anxious. Then women on their own, just as awkward or anxious as the couples, a look and a small smile flashed in my direction as they took a seat.

Every time I smiled back, I felt like an imposter.

Here were women and couples waiting to be seen by a doctor. All, presumably, waiting to find out what they could do to start a family, how they could successfully get pregnant. Here was I, alone, flicking through a magazine, surrounded by the smell of my GCSE Art class. In this place where people waited and learned if they could pursue fertility treatment, I was waiting to find out if I had an insulin problem.

I think that’s partly why it felt so weird. It didn’t help that on my first visit to this clinic a couple of weeks earlier, some language mix-up (as is inevitable when you’re speaking to doctors in a language you are still learning) had led to them asking me when my partner would be arriving to fill in the forms and have his first check with the doctor. Not an awkward scenario at all. No sir-ee.

This time I’d gone on my own for two reasons – firstly it was a Friday morning when most other people I knew would be at work. Secondly, I hadn’t thought I’d need “moral support”. I was only going to sit there and wait for the glucose drink to be processed by my body while they monitored it in the form of taking blood samples every once in a while. As I watched couples being called into consultation rooms I found myself envious of them. At least THEY had someone to go through this with them. At least THEY weren’t dealing with this on their own. And it dawned on me, in that moment, that I had never planned to deal with this on my own.

It’s Not Just About Periods

If you’ve read my previous post about polycystic ovary syndrome (PCOS), you’ll have a little insight into what I’m talking about. It’s been suspected since I was 18 that I have PCOS. But in the 12 or so years since that vague diagnosis, I’ve not really explored treatment options or really been aware of the additional health issues that can arise connected to it.

Earlier this year (2017) it became time to start exploring treatment. It wasn’t really my decision to be honest – it came more from my gynaecologist discovering white marks in my ovaries that were probably cysts but could be tumours and referring me to the hospital for further tests. At the same time she referred me to what the Germans call a Kinderwunsch (fertility) clinic to determine if I really did have PCOS or if I had been misdiagnosed all those years ago. All of these steps lead to me admitting it was probably time to look into ways in which this condition could be managed and my body could be a bit more “normal”.

Honestly, I never planned to deal with this on my own. I knew one day I would need to get treatment of some kind but I’d been expecting it would be something that would happen once I actually found someone I wanted to be with for forever, someone I wanted to have kids with. The fact that all the research I keep doing into this condition suggests that medical science doesn’t really know how to treat it or what really causes it, didn’t exactly fill me with confidence to pursue treatment. That plus how, unlike some other women I’ve come into contact with the same condition, PCOS didn’t really seem to affect my life that negatively. So really, what was the point in getting treated? It’s not curable anyway.

Know What’s Normal

Well apparently one reason to start being serious about the treatment is the potential other conditions it appears it can lead to in later life. One of those being diabetes. Which brings us back to the reason I was sat in this Kinderwunsch clinic feeling jealous of all the women coming in with husbands, boyfriends, partners, and parting with my own blood in the first place.

The doctor, having now pretty much confirmed I did have PCOS, needed to determine if I had abnormal insulin levels too. Insulin resistance or abnormal insulin levels can be an indicator of PCOS (and obviously if this is the case it adds to the risk of developing diabetes later in life). The thing is, just because you have PCOS doesn’t mean you’ll have high insulin levels (mine are pretty normal by the way), and you can have insulin resistance and not have PCOS. It’s not a hard and fast rule, it’s just one of the things medical research has noted about the condition.

And this is the thing, so little seems to be known about how to treat PCOS and we women don’t often talk about things like this except to perhaps our closest girlfriends – and even then it’s sometimes heavily edited – this is the main reason I have chosen to write about what I’ve been through.

It’s a little scary because there are people out there who know me who are reading this, but in the end, I need you to know too. I need you to know so that you can share it with your friends. Girls, I need you to read this to know that it’s important to know what’s normal for your body – and if it’s vastly different to other people’s normals, to know why that is. I’m writing this because I need people like me to know they aren’t going through this alone. That it’s ok to sit in the fertility clinic and be jealous of the people there who most likely are in a similar position but have a partner by their side. It’s ok to not really know what to do or how to handle this. It’s ok to wonder why your body sucks at this pretty basic human function – being able to reproduce – and to wish you didn’t have to deal with it alone (even if you’re not even thinking about actually having kids yet!). It’s ok to wish there was someone here with you, holding your hand through it all. 

And, you know what? It’s ok to talk about it too. Because it’s through talking and sharing we discover we aren’t really alone. We discover there are others who know what it’s like, and there are friends who wish they could make it better. Through talking we find those who will always be there for us, friends who will listen. And by talking we help other girls, other women, who were told they’d “grow out” of it or that their irregular periods were “just a phase” or those who are tired of trying ANOTHER pill, to take charge and learn to love their bodies, quirky ovaries and all.

4 thoughts on “Life with PCOS: It’s not just about periods

Add yours

  1. Liebe Haley, mein sensibler 😉 Frauenarzt hatte mir bereits mit 16 gesagt, dass es schwer für mich würde, Kinder zu bekommen. Mit diesem Gedanken bin ich jahrelang rumgelaufen. Ich bin damit immer sehr offen umgegangen. Pille(n) und Laparoskopie haben geholfen, dass sich die Zysten nicht zu etwas Bösartigem auswachsen. Aber kleine Follikel habe ich heute noch. Die stören und schmerzen aber nicht.

    Die große Überraschung dann in Sachen Kinderwunsch: Es war überhaupt kein Problem, schwanger zu werden. Du kennst mein größtes Glück 🙂
    Ich wünsche dir, dass es dir auch so geht. Und dass du nicht mehr häufig in Kliniken sitzen musst.
    Ich drücke dich ganz fest. Dani

  2. Lovely post. I’m sorry you’ve had to deal with these things, but you are so incredibly right – it’s okay to talk about women’s health. In fact we should talk about it. Thank you for sharing your story. Wish you all the best – speak766

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