This is a highly personal piece today. It’s a part of my life every single day. There is no ‘cure’, but there are ways of handling it to make it easier. The amount of information out there is absolutely overwhelming so if you suspect or have PCOS please don’t think I’m the oracle or that my research is all there is to know. There will also be opinions that have been built upon emotionally because of years of discrimination and sheer lack of help and awareness. I’m here to discuss my relationship with this condition and try and try to work through some of my issues of embarrassment I have when talking about it and  hopefully, also giving you the absolute promise that you are not alone.

My pcos symptoms started in my mid teens. I had my first period at age 13 and then nada. Nothing. It didn’t happen again for over 6 years. To be fair at that point, I didn’t know about the condition and I wasn’t educated enough to think there was a problem. I simply thought that periods took a while to get going. In school, our sex education lessons saw us separated into groups of boys and girls and taught the ‘important’ things about our changing bodies. The boys were led to a different classroom, where undoubtedly condoms were thrown at them and they were told to be safe. I’d like to point out here that my disdain for the ‘lesson’, yes you’ll notice the disdain with the amount of apostrophes I’m using, comes with my learnings over the years about my condition. In the girls class, we were given a magazine about what it meant to be a teenager and it came with a tampax. How about that! And that was it, nothing about being safe during sex, and absolutely no information about irregular periods. I appreciate that talking about fertility at such a young age may be inappropriate but it is an education I feel needs some major attention. Because where these conditions can cause infertility, they also come with a vast range of physical and mental health implications too. It’s also important to point out that life is not a fairytale, getting pregnant is not always easy, marrying the prince, living in the dream castle and getting pregnant on your wedding night isn’t always the case. If you’re anything like me, you’ll marry your prince after living together for four years and fall asleep on your wedding night. Romantic! As important it is to tell children the lesson of being safe during sex, because you may catch something or indeed fall pregnant, it’s so damn important to tell them that there is another range of stories. The couple that struggle with infertility. The couple that sadly had a miscarriage. The couple who had children young. And the couple who did not want children! There is not just one narrative. So this needs to be taught or at the very least discussed. 

It’s been twenty or so years since that enlightening experience, and where then I would have wondered why endometriosis or Polycystic Ovarian Syndrome, among other fertility and debilitating conditions, was important to learn about, I’m now a 34 year old woman teaching myself about it all. I suppose moving forward after this piece it would be prudent to ask some teens about the sex education they are receiving, or better yet, the teachers who have to give it. I dare say they are working from a guideline set out by some high seated council that knows best! Anger unfortunately will spill out from time to time. This is your warning. 

Daily symptoms of this condition are so surprising that at first most of them seem like a joke. However after countless medical texts, research pieces and noticing the patterns within groups of likewise women, the actual list of symptoms is enormous! When it comes to myself, I have all of them bar one or two. It’s only through my self education that I’ve found symptoms I wouldn’t have thought were out of the norm for everybody to be honest. But hey, ho, they are all part and parcel of this condition. Which in a way, makes me more accepting of the symptom as a whole. One of these for example is anxiety.

Ah the ‘A’ word. It has been brought into the glaring spotlight for the past 3-4 years and it’s creating awareness where once there was none. In my eyes, there are two forms of anxiety. There is the dread of going to a party and wondering what to wear/eat/drink, the feeling of shyness you know will creep onto your being as you are presented with a room full of people and there’s definitely nervousness such as when you read a piece of news. Covid-19 has reached the UK for instance. This type of anxiety comes and goes with the occasions that are making us anxious. It’s something everyone can feel at any time. And in most cases you live without it more than living with it.

And then there’s the other type. The complete saturation of anxiety into your whole being. The utter lack of sleep when analysing something minor. Maybe text that hasn’t been returned from a friend. Last year I had a full on meltdown because a friend hadn’t replied to my messages and I thought I had done something wrong! The heart racing and yet immobilising fear of new situations; answering the door to a stranger, talking on the phone, starting a new job. There have unfortunately been times when I’ve let the doorbell ring, or the phone go unanswered because I’m panicking on the other side. And quite surprisingly, I have avoided job interviews too. When you live with anxiety, you develop around it so fully that you don’t initially recognise it as anything, you fully believe it’s just how everyone is. Everyone at some point in their lives has surely travelled for 90minutes on the train to university only to turn around at the lecture room door because people will turn to look at you when you walk in, right? It seems when looking back, I’ve been struggling with anxiety for a long, long time. At the time it just felt like I was a nervous girl. 

Anxiety is a big symptom in the world of Pcos, how it affects people mentally is absolutely draining. Pile on the other symptoms which will make your anxiety worse and you’ve got a condition that needs more attention from the government and healthcare institutions. Some of the biggest symptoms I deal with are:

Weight gain – I’ve always been the bigger girl. At age 14 I was a size 14/16 and was very aware of it. Now I’m bigger and yes I’m still aware. In the beginning I was conscious of the fact that I had pcos because I was bigger. And in the most recent of years I have discovered that it is simply not the case. Weight gain is a symptom of PCOS not the cause. I’ve started owning the fact that my weight is partially not my fault. I’m not going to sit here and tell you I eat a lettuce leaf smoothie everyday, because I don’t. But what I do know is that exercise and the things I eat aren’t as simple as ‘get up and move, whilst digesting a tiny salad’. My body is in a constant state of fat storage behaviour because of my insulin resistant cells. My body’s cells are at war with my brain. It’s a difficult feeling to process when someone glances at your stomach and must think you are a lazy cow, when you aren’t choosing to be this way. 

Inflammation – so my body is also in a hyper alert inflamed state. So I’m more likely to suffer from IBS and stress. Apart from the physical side effects, the stress is on my cells which doesn’t help them when they’re already not functioning the way they need to be. Fun! Which is why, when I’m told to ‘relax’ I find it hard not to implode there and then. 

Hirsutism – that means hairy. I have hair growing everywhere on my body. Everyone does. But mine is thicker, darker and not bloody wanted. It makes me feel unattractive, self-conscious and it’s the hardest outward effect of this condition that I deal with. At times it stops me being loving with my husband. I feel like a man and it’s very difficult to live with. I often try to turn a situation around when you say ‘you suffer’ because more often than not, if you can find a way to come to terms with something, you can say you ‘live’ with something and in a way it stops controlling you and your quality of life. But for me, living in this hairy body is disgusting and I suffer its physical and mental effects everyday. It’s a physical reminder that I’m different. There have been a lot of times where I’m talking to someone and they’ll notice my face is different, and it’s unfortunate that I see their eyes move from my eyes to my chin. It’s not their fault, 

Infertility- I’m going to do another blog shortly on what PCOS has meant for me and my fertility journey (see journey, not struggle) because it’s just huge. Look out for it soon. But let’s just say, it’s fucking hard! Capital F!

Ance – I had horrific spots at school, I was bullied badly over this, even by ‘friends’ and at the time it was believed to be part of puberty. But I believe that as my puberty never really began properly because of the jumble of hormones my body was coping with vs the normal puberty struggles, I had spots competing in the hormone olympics. I’ll have the occasional pimple now and again, but nothing like back then. 

Hair loss – oh yes,how can I lose hair on my head if it’s everywhere else on my body. Don’t even start! My cousin first noticed some of the hair at the back of my head was shorter than the rest back in 2011. We blamed the amount of times I had bleached my hair and as it was at the back it didn’t bother me. A few years ago I started reading about hair loss and PCOS. It causes bald spots and thinning of the hair. Now my hair was so thick and curly when I was young that it regularly became knotty and matted. Nowadays, I estimate I’ve lost 50% of my hair due to thinning and the short bit at the back is still there. As a girl who suffers with her weight and facial appearance, my hair is my security blanket. Another physical reminder, that not all is as it should or indeed could be. 

Insomnia – well this one shocked me, it goes hand in hand with the theory of people living with PCOS having no energy. I’ve had insomnia since I started at secondary school. I would regularly not sleep or manage a few hours a night. Ultimately this came down to the stress I was experiencing at school but it also turns out to be a major symptom of the condition. It is said to go hand in hand with anxiety. It wasn’t until Mr W and I bought this house that I found myself sleeping better and permitting myself the time to nap if I needed it. I started listening to my body when it needed sleep. Before that I would muddle on through and had learned that being tired was just a natural thing that everyone felt. WRONG! PCOS also drains your energy from your body, so no matter if you’ve had no sleep, 3/5/10/14 hours sleep, you will, or at least I do, feel tired. The last couple of years have been better, and it’s only when I’ve had a severe anxiety attack, that I find I can’t sleep. But as I become more accustomed to what’s going on and recognising the signs, I can calmly go about my day knowing it won’t last forever. 

So there you have it, a day in the life of me! A lot of how I feel about the above is determined by my mental state. It’s my anxiety levels that will control my mental health. And a lot of the symptoms will cause me to feel anxious and my anxiousness will cause my internal symptoms to flare up and back to the beginning we go. So yes, I’m living within a vicious circle BUT somehow knowing there isn’t a cure but it can be managed makes me realise that there’s only so much I can do. 

Over the next two or three blogs I’ll be detailing my struggles with fertility, the NHS help I’ve gotten so far and the steps I’m taking to make my condition more manageable and in turn make my life just that bit better. 

I want to say now, that I have an amazing husband, beautiful friends and family, most of whom have not made me feel like a freak in any way nor stopped me talking when I’ve discovered new things about this condition. The wonderful power of research and owning your condition means you can take control and I believe that’s the first step on a very difficult and winding road. You are not alone.