A life with PCOS

My journey with PCOS didn’t start at infertility. I was already aware of my condition and the trouble it could cause us going into the whole baby-making process.

In fact, going into our marriage I was aware of my condition and the trouble it could cause us when the time came for making babies.

In fact, going into our relationship, before we’d even kissed for the first time, I was aware of my condition and the problems it could cause this tiny flickering light that had only just been kindled.

In fact, looking back over my life, I am realising quite what a massive impact this polycystic ovarian syndrome has had on many areas and decisions and actions I’ve taken. And the more I think about it, the more I can see how its tendrils are entangled around everything from my sense of self worth to my physical health and emotional development.

So I want to talk about it. I’ve spent a lot of time on this blog looking at the impact PCOS has had on my fertility, or lack thereof. But the story doesn’t begin, or end, there. So this post is an attempt to set the infertility part of the journey in a broader context of living with PCOS and its impacts on my life.

I was diagnosed with PCOS when I was 13.

One Sunday morning, knelt at the altar to receive a blessing during communion at my childhood Anglican church, my best friend innocently and jovially pointed out to me that I was “growing a beard!” This was not new news to me. An ‘early bloomer’, I’d already developed many normal female puberty signs and, like the overachiever I am, my body had also thrown in some masculine ones in the form of hair growth in unusual places. The side of my face being one of those places.

I laughed off my friend’s comments and as soon as I’d been blessed, made my way to the toilet to take a look at what I thought I’d covered up with a razor (and an unfortunate lack of awareness of what that would do to the hairs growing in dark but soft clusters at my jaw line). I’ll never forget what I saw. The hair I’d cut with the razor had grown back, this time thicker and darker, and more of it.

I spent the next day in bed. I was too sad and ashamed to face the world. To face school. I had long, blonde, curly hair, and from that day forward I wore it down around my face. It became my mask, my concealer. No one noticed this change in style – I was hardly a trend-setter at school – but it made me terrified of anything where having my hair tied back was enforced… Science labs at high school, swimming classes in PE, PE in general actually. I had hair growth on other parts of my body too, but these were more easily concealed by clothes. I felt like I’d entered into this giant secret I had to conceal from all others, at any cost. Two years before, I had been bullied at school for the whole year for no apparent reason at all other than someone has to be at the bottom. So I already knew it didn’t take much to fuel the horrific fire that was teenagers at school.

They. Mustn’t. Know.

Then one day at school, I got my period. Not my first, that had happened a few years before. But they had been getting more irregular for a while, and this one was the most blood I’d ever seen in my life. I leaked through my school clothes and onto the lab stool I’d been sitting on. I made my excuses and left, trying to clean up behind myself with the hem my skirt as I did so. I went home, as it was too much to deal with and I needed to change. Luckily only my best friend sat next to me knew what was going on. No one else noticed. I’d gotten good at hiding things.

Mum was great. She comforted and took me to the doctors. I remember sitting utterly terrified in the doctors’ waiting room. Not because I was worried about some horrible illness, but because I’d actually have to show the doctor the hair growth. It mortified me. The doctor was kind enough, and with all the information she quickly diagnosed PCOS. I was prescribed a contraceptive pill to try to keep a handle on the symptoms – mostly the irregular, heavy bleeding – and told it might help with the hair growth (it didn’t). But in any case, “At least it was tucked away at the sides of my face where I could hide it with my hair, and not plastered across my top lip for the world to see.” Great.

Oh, and, “You might need help to have children… but that’s far, far off for now so don’t worry about it.”

As much as I was an early bloomer physically, I severely lagged behind my peers when it came to relationships. The last of all my friends (and anyone I knew in wider circles) to kiss a boy, have a boyfriend, lose my virginity (by at least 2 years), I felt under a lot of peer pressure to get moving on these things. At a developmental time when hormones are bonkers, mine were even more so, and I was just so alert to this Secret I was hiding. What if, during my first real kiss, he touched my face? He felt the hair? He told everyone? And how the hell could I cover it all up when I was naked? Did you really have to be totally naked to have sex? Perhaps when my time came, I could just stay dressed, like a quickie in a film where the action bits are just off camera? I was also putting on weight.

How could anyone ever fancy me like this?

The negative consequences of PCOS and its symptoms on my self esteem hasn’t ever been something I’ve thought about. And I’m not blaming PCOS for all the bad decisions and cake that I’ve taken. But looking a little more closely, with the wisdom of age, I can now see how it played a role in a more insidious way.

Believing myself to be an anomaly, and a somewhat unsightly and unlovable one (in my teenage definition of “love”) at that, I didn’t rate my chances for romantic success highly. As such, I set the bar low. And growing up in Kidderminster, that low bar could have been a dangerous thing. As it was, the worst thing I somehow ended up with was older guys. I would like to think that in part this was due to my intelligence (my ability to hold opinions and a conversation beyond my years), but most likely it was due to their lack of success with women of their own age, and my large boobs.

Looking back now, I want to shout at 18 year old me. I want to tell her what she’s worth, and how her ideas of love and romance were all wrong. That any man who would dump her for some errant bodily hair would be a man worth losing. But instead, 18 year old me went on believing that she, with all her fat and hair, was incredibly lucky to get any attention at all from a member of the opposite sex – no matter how many issues he clearly had – and therefore I should compromise and allow myself to be treated as he pleased, because even he would likely be off the moment we got intimate in any physical sense and he realised The Secret I was hiding.

Unfortunately for the narrative in my brain, but not for many other reasons, they did leave me. All of them. But not, I’m sure in retrospect, because of unsightly hair, but rather because they realised I had a brain, and all they’d wanted were the tits.

“I think you need to tone it down a bit Laura, you’re scaring all the men away.” – Anon.

During university I found my feet a bit more, as many do. Still concealing my facial hair with my blonde curls, and not telling a soul my Secret, I tried different ways to deal with my Problem. Razor, eppilator (ouch!), hair removal creams (total waste of money), scissors, and finally, laser treatment. This last one was incredibly painful, and even more incredibly expensive, but I was working for Pfizer at the time on a sandwich year and rolling in cash (by student standards), and it did start to see some results. But again the secrecy was paramount. My laser appointments were after work, and too embarrassed to tell my housemate where I was really going, I lied that I was swimming. Then to complete the lie, I’d stop into a pub on my way home to wet my swimming costume and my hair in the sink, while my pink and swollen face still stung from the treatment I’d just endured. Sometimes I’d sit on the bench outside to cry before finally heading home.

The lasers didn’t hold back the hair for long though, and upon returning to university I continued to manage it myself with concealing and hiding.

Then I met John.

Actually, first I met God. That’s important here because my self worth and confidence got a complete overhaul in the years between meeting these two people. Though I was still hiding my Secret, I was now so much more than just that, and I knew I could raise that relationship bar I’d set so low during my teenage years.

So yes, John.

Here was a man who wanted to know me. Actual me. He asked *me* questions, and seemed to want to know the answers. He respected me, and challenged me. And then he kissed me, and after the world had stopped spinning – merely a few days into our relationship – I had to talk to him about PCOS. Because I knew he wanted children. And ok, this was a tiny, new thing, but also we both knew we weren’t messing about here. After 7 years each of being single, neither of us wanted to start something that couldn’t feasibly become Something, and the ability/desire to have children can be a deal-breaker.

So I told him. I told him what the doctor had said 14 years ago, and realised that in my mind that had morphed into, “You probably won’t be able to have children.” And to my surprise and joy, he brushed it aside – he’d known plenty of people with PCOS who had children with no problem. I discovered he had more faith for this to happen than I’d ever been able to muster in all the years since diagnosis.

Our relationship progressed, and still I was terrified of his finding out my Secret. I’d flinch if his hands touched my face, and worry about how things would go when he found out about the rest of the unusual hair growth. But as with everything between us, it came down to a conversation. One in which I eventually broke down and poured it all out to him, fully expecting him to leave me, as the others had. But he didn’t. He said that he’d guessed I would have these symptoms from others he’d known suffering the same, and that he was in love with me for who I was, not where I grew hair. It also helped that he was way more hairy than me, and thus I felt feminine with a man for the first time in possibly forever.

He was the final piece of my healing jigsaw. Finally accepted, hair and all, for who I was, I defied all the fears of rejection and ridicule so long hidden beneath my Secret.

And now I can talk about it openly with others suffering the same. So for them, and for 13 year old me:

You are not alone.

You are of value and worth, regardless of your size and where hair grows on your body.

You need not be locked in by shame and fear.

Children are not impossible for you.

Set the bar higher – he’ll be worth the wait.

Wear your hair up. It looks pretty.