Polycystic Ovary Syndrome: Welcome to the Cysterhood

pcos

Maybe you’ve heard of Polycystic Ovary Syndrome (PCOS). Maybe you haven’t. WebMD describes it as:

Polycystic ovary syndrome (say “pah-lee-SIS-tik OH-vuh-ree SIN-drohm”) is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. Most women with PCOS grow many small cysts on their ovaries. That is why it is called polycystic ovary syndrome. The cysts are not harmful but lead to hormone imbalances.

Cheers, WebMD. I hadn’t heard of PCOS until I was 19 years old, and realised I hadn’t had regular periods for two years. When I say this to people they always look shocked and say something along the lines of ‘But how could you not realise?! Mine comes like clockwork / Oh my god, that doesn’t sound good. / Were you pregnant?’ Well, the truth is I just never really tracked it. No, it’s not good. And no, I wasn’t pregnant (for the record, I don’t think that’s how pregnancy really works, anyway).

I know that it seems ridiculous to not have noticed it for so long. When I first started getting periods aged 13, I was told it could take up to a year for them to regulate. They sort of did, but not totally. I would miss a month here and there, but it just didn’t seem like a big deal – I wasn’t sexually active, so I knew I wasn’t pregnant. When I was 16 I went on the pill. So every month, when I had my ‘pill free’ week, I got my period. No guesswork, it just happened. Because I made it happen. After a year, I came off the pill. My periods were irregular again, but I was told this was normal; after coming off the pill it would take my body time to “find its natural rhythm”, I believe were the words my GP used.

So, 19 years old. I was at university in England, and lived in a house with seven other girls. There was a lot of girI talk: we would sit round eating dangerous amounts of chocolate and discuss boys, sex and periods. Amongst other things. Anyway, it was during one of these talks that I realised my body still hadn’t found its natural rhythm. It was sure taking its time – I’d only had three periods over the last twelve months. I voiced my concerns to the girls. We concluded I needed to make a doctor’s appointment.

Some people get very nervous in waiting rooms. I am not one of those people. My grampa ran his own GP’s surgery and my mum is a nurse, so I’ve always felt comfortable with medical settings. The smell of antiseptic is weirdly comforting to me. I actually quite enjoy getting injections. When I was little, one of my favourite places was the storeroom of a family friend’s pharmacy – I loved standing on the little stool and reading the names of the tablets and antibiotics and ointments. I was comfortable waiting to see the doctor. I had been in the week before to give blood and urine samples, and it had been easy. I imagined I would get told to just relax, my body was just finding its natural rhythm, give it time. This did not happen.

When the doctor ushered me into her office, I suddenly felt a little nervous. This had never happened before. I am not someone who gets embarrassed about being poked and prodded, or listing off weird symptoms, or even talking to a male doctor about a ‘female matter’. I had never felt nervous in a doctor’s office before. But suddenly it seemed like the stakes had been raised.

I had done a little research about what was going on – well, I had typed my symptoms into google. Anyway, I didn’t like the results. Polycystic Ovary Syndrome kept coming up, and although I didn’t read too much, something kept standing out: ‘can affect fertility.’ I had sort of brushed it off, but suddenly when I was sitting opposite Dr Walton, it was all I could think about.

“Okay, so first I’m just going to run through a few general health questions. Are you a smoker?”

“No.”

“How many units of alcohol would you say you drink per week, on average?”

This one took a little working out – I was, after all, a student. I had been drinking the night before. And the night before that. These questions continued for a few minutes, then she measured my height and weighed me.

“Good, your BMI is in the healthy range. Okay, so you say you haven’t been getting regular periods. When was the last time you had one?”

“Four months ago.”

“Okay, and how long would you say on average you go between periods?”

“Like… three or four months, probably. I’m not really sure. I know you should keep track of them but I… well, I just sort of forget because I’m more used to not having them.”

“I see. And how long has this been happening? Just a rough estimate.”

“About two years. Even when I first started my period, it never really regulated. Like, I can’t remember it ever being like clockwork. Then I went on the pill for a year, and even though I’ve been off it since I was seventeen, my body still hasn’t uhh… found it’s natural rhythm.”

“Okay, I see. Well, your bloods showed that your hormone levels are imbalanced. This, along with your irregular periods, tells me you have Polycystic Ovary Syndrome. Have you heard of it?”

I felt like crying.

“Em, yeah, a little. Well, I mean, I’ve read about it recently when I was trying to work out what might be wrong with me.”

“I recommend you go on the pill, that way you can regulate your periods.”

At this point, I sort of zoned out. I was saying things, she was saying things, but I wasn’t really there. She started to give an overview of PCOS, and I handed over my arm for her to check my blood pressure. It was fine. We talked a bit about the pill, she pencilled me in for a follow-up appointment, and handed me a prescription. I wanted my mum. I didn’t want to go to the pharmacy and get my prescription. I wanted to go home and get into bed. On autopilot, I started to walk away from the health centre, off campus, towards home.

I got to the lights and waited for the green man. I was anxious, I needed to get home so I could think about what I’d just been told and maybe cry. Then I saw a friend of mine who I’d liked (really, really liked) since last year waiting to cross from the other side of the road. He was holding hands with his new girlfriend. I have never felt more alone.

As the lights changed and we began walking towards one another, I suddenly became very aware of the tears that had been threatening to fall since the doctor’s office. I forced a smile, it was too big. I swallowed the lump in my throat and said hello when we were close, it sounded too cheery. I put my head down and passed without waiting for his reply. I needed to get home.

PCOS is not a feminine condition. I know that might seem like a strange statement to make, given that it only affects women, but it feels like it is robbing you of your femininity. Slowly but surely, you notice more and more symptoms crop up, and with each new discovery you feel more and more like your body is betraying you. The first one for me was the irregular periods, although I didn’t realise it was a symptom at the time. This is the one that still weighs most heavily on my mind, and every now and then I become obsessed with taking a break from the pill and tracking my natural cycle. The next ones I noticed had also already been apparent for a while, but just started to feel more permanent: weight gain and acne. The next was grim, excess body and facial hair. A few months after I was diagnosed, I found myself having to tackle my ‘tache or tweeze out random chin hairs, something I’d never had to do before. I’m also convinced the hair on my legs has been speeding up its regrowth over these past few years, and now grows back at a superhuman speed.

Dealing with these symptoms can be frustrating, but that’s all you can do: deal with them. The one thing that still truly upsets me is the idea that I might not be able to get pregnant naturally. I know that trying to start a family is way, way in the future for me, and I also know that having PCOS doesn’t automatically make you infertile, but for someone who has always wanted to have kids – and lots of them – it’s a hard possibility to think about. I’m someone who’s been broody for pretty much their entire life. Ever since I was little, I’ve imagined myself having a big family (we’re talking four, five, maybe six kids). So the thought that that might not be an option for me is just crushing. And I really mean crushing, as in I feel like the wind’s been knocked out of me every time I give it a moment’s thought. Like I could maybe possibly be sick if I think about it for too long. And without hesitation, I feel a lump start to form in my throat and tears start to pool in my eyes every time the thought crosses my mind. I have friends who have no desire to have kids, and sometimes I feel jealous that they have clockwork periods and cystless ovaries. I wish we could trade.

Having PCOS is shit. A lot of GPs seem to know very little about it, just offering the pill as a sort of fix-all. There’s no cure, and that can feel very bleak. There is, however, an online community for women who have it. They refer to themselves as Soul Cysters, or the Cysterhood. The first time I saw it, it made me want to cry. I was part of a private members club I never wanted to join. Still, it’s nice to know you’re not alone.

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4 responses to “Polycystic Ovary Syndrome: Welcome to the Cysterhood

    • thank you so much. i really agree with your thoughts about western medicine – i’ve tried to control my PCOS through clean eating and lifestyle changes, and i really do notice a difference when i stick to it.

      Liked by 1 person

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