Happy first birthday to my PCOS diagnosis! What a precious bundle of joy it is. Okay, let me swap out the words ‘precious’, ‘bundle’ and ‘joy’ for words that may get me banned from WordPress, and you’ll have a clearer idea of my opinion of poly-cystic ovarian syndrome.
TW: periods, fertility, hospitals, invasive procedures
To celebrate (if you can call it that) living with this diagnosis for a year, I thought I’d delve into what it took to get diagnosed and how I’ve learnt to live with it. In reality, I reckon I was living with PCOS for two years prior to my diagnosis, but hey – at least I know what it is now! Before I jump into it, let me give you a little background into what PCOS is. Simply put, it’s a hormonal disorder that affects the ovaries. To get diagnosed with PCOS, you need two out of three symptoms – irregular periods, high levels of hormones, and polycystic ovaries (I have the first two). Whilst it affects people differently, many people will struggle with symptoms for the rest of their lives, making it a chronic illness. As someone with asthma and chronic anxiety already, I’m not phased by that term. So, without further ado, let’s delve into the annoying, difficult, and sometimes laughable chronic illness that is PCOS and how I got to where I am today.
Getting a Diagnosis (aka Like Getting Blood Out of a Stone)
The first step I took to getting a diagnosis was actually more like a series of little steps, followed by some nervous jogging, confused running, and a panicked sprint to the doors of A&E. Two years prior to getting diagnosed, I repeatedly went to my doctors for various issues; heavy periods, clotting, stomach pain, and (there’s no other nice way to put this) lots of poo related problems. It was only when I had to leave work early in December 2019 and walk myself to A&E, clutching the left side of my stomach and bleeding where I should not be bleeding that they suddenly took notice.
Enter three months of blood tests and fainting and weeks off work, followed by A&E trips and plain toast and whispers of the big three Cs (Crohn’s, Colitis, and Cancer). Despite everything the doctors said, in the back of my mind, I knew it was something period or hormone related. I just had a gut feeling (which is funny because gut feelings are what got me here in the first place. Geddit?). Of course, the medical staff disagreed. Therefore the tests continued, but there were never tests on my hormone levels. I had to poo in a cup, pee in a cup, and had a camera inserted where I never want a camera inserted again. All my tests came back negative; healthy even! So in March 2020, I began to advocate for myself.
Advocating for yourself in a doctor’s office is hard. Advocating for yourself over the phone in a global pandemic is even harder.
I spoke to my hospital doctors and consultants and examiners; over the phone they couldn’t see my swollen stomach or look at the cycle charts. I’m not sure they would have believed me anyway. It was only when I landed back on square one (aka pestering my doctor’s office for hormone tests) that I was finally granted one. I don’t know whether it was to shut me up or through general concern but the results came back and – hey, what do you know? I was right. I had a hormonal disorder. I found out it was PCOS through a swift phone call that lasted thirty seconds, and a text to my phone of a link that took me to the NHS advice page. Yikes.
A Year of Diagnosis
I would be lying if I said I wasn’t distraught when I heard the news. I cried. A lot. Getting told you have a disorder or a chronic illness is never a fun ride. For me, there were two big stressors that led to my emotions here. Firstly, I already have two chronic illnesses, why do I need another one? Add anaphylaxis to the mix and I’m every first aider’s nightmare. Secondly, having PCOS means it’s harder to naturally conceive. I am in no way ready to have children yet, hell no. But when I was given the diagnosis, I had just gotten engaged to my fiancé, we were planning our married life together, and we both knew we wanted children in the future. It was all fresh in my mind and PCOS came into my life like Miley Cyrus on a wrecking ball and I was Liam Hemsworth’s PR team.
As soon as the diagnosis came in, I was whisked away to have a camera in my uterus to see if I had the third symptom – cysts. I came out a bit tender from all the prodding and poking, but luckily with no cysts or benign cysts. Then, I was left on my own to just get on with it. It turns out there isn’t really any treatment for PCOS, just ways to minimise it or try and control symptoms. Fun. So, I began my research. Just call me the Penelope Garcia of the PCOS world.
Most websites and journals suggested three ways to alleviate symptoms or help with PCOS; losing weight, changing your diet, or taking hormones.
Of course, I started with the weight loss. In hindsight, it was probably not a good first choice for a woman who had struggled with body acceptance and the societal pressure of weight loss, and was finally in a neutral, almost positive, frame of mind regarding her body. Unfortunately, no matter the size of your body, one of the only ways to change up your hormones is to lose weight. I upped my workouts to four or five a week, and chose a mix of yoga, HIIT, and cardio. This was at the point of the pandemic when Joe Wicks and Yoga With Adriene reigned supreme so I was truly spoilt for choice (to be honest, Adriene still reigns supreme in my heart). The funny thing about PCOS is that one of the main symptoms is struggling to lose weight. So to stop the condition that makes me gain weight, I have to lose weight. But I can’t because my condition won’t let me lose weight. You can guess how successful this was…
So I turned to changing up my diet. There were hundreds of books out there on ‘how to make PCOS friendly foods’ and recipes like ‘guilt-free, carb-free, taste-free, PCOS-friendly mac and cheese’ (not my jam). Luckily, I eat a pretty PCOS healthy diet anyway! Cooking is my favourite hobby, so I was already trying out new things and keeping my meals full of veggies. I guess the only change I made was to cut out red meat at home completely; considering I only ate it about twice a month anyway, I felt no change. So I picked up the phone, called my doctor, and asked about being put on anything for my hormones. Here’s how the conversation went –
“Are you trying to conceive?” “Oh God no, absolutely not, not yet.” “Right, well I can’t help you right now.” “Oh. What about my pain management? What about weight loss?” “Well, take some Buscopan and paracetamol for the symptoms. And according to our records, you aren’t overweight enough to have NHS weight loss help. Goodbye.”
Cool. So, I’ll just get on with it then? That seems to be my PCOS mantra…
Getting On With It
Getting on with it is exactly what I’ve been doing. Tracking my period and symptoms has shown me everything happens on a cycle. Instead of your normal 28 day period cycle, I have a 50 day cycle and an average period length of 12 days. Goodness, I yearn for those teenage years where I would bleed for four days and be done with it (although, I don’t yearn for anything else from teenage years, that time was a minefield of emotion).
I tend to get PCOS flare ups and hormone issues about two weeks before my period starts.
Sometimes the symptoms are manageable and I get a little pissed off, nothing more. Other times, you’ll find me curled up in bed for days with a hot water bottle, codeine, and necking Lucozade and plain toast like it’s no-one’s business. The symptoms tend to centre around immense brain fog, issues eating certain foods, swelling around the stomach and uterus, and pain. Do you remember how I called PCOS a “sometimes laughable chronic illness” at the start of this? Well, it’s only laughable because when the swelling hits, my uterus/stomach area swells like a comical balloon. Okay, that doesn’t sound that funny, but my fiancé and I have decided to call my swelling Fenton, so when I am in immense pain I can shout “Jesus Christ, Fenton!” like the original meme. It makes us laugh. You’ve got to find joy in the little things.
Once the flare up is out of the way, then it’s a loooong period-town. But hey, swings and roundabouts; it might be long and clotty and disgusting, but at least I don’t get them too heavy or painful. The worst bit of PCOS periods that I personally experience is the sciatica. I am a twenty-five year old woman, who is hobbling around my house, clutching my backside and shouting “ohh my sciatica!”. Come onnnn, I thought I had at least another 20 years before sciatica became a part of my everyday vocabulary. Once my period is over, I tend to get hit with a migraine. I don’t know why or how but it happens like clockwork. Two weeks of PCOS pain? Check. A long period? Check. Singular migraine at the end of it? Check check and check. Then I normally have two weeks of non-PCOS related life, before it comes back like The Terminator himself.
Look, I’m not a miserable person; I love finding the silver linings in things. I’m happy to say that having PCOS has brought some wonderful things to my life.
For a start, I actually enjoy exercise now! Because I hit the ground running on weight loss (not literally running, I hate running as an exercise), I tried every single type of exercise to find what I like. Personally, I’ve found Dance HIIT and Yoga to be my saving graces, with the occasional weight work thrown in for variety. Regular HIIT is too repetitive, running is boring, I find gyms intimidating and expensive. Whilst I’m no longer setting exercise and weight loss goals, my body yearns for me to exercise if I haven’t in a few days. So, I exercise around three times a week, with no pressure, just to simply move my body. I love how it only took a chronic illness for me to enjoy working out.
The other silver lining I’ve found is that I talk about my condition. A lot. Hopefully not in a ‘~ohhhh look at meeeee~’ way. So many people have PCOS or similar conditions, but it’s never talked about because it’s a ‘period issue’. Excuse my French, but absolutment pas! I have a public platform where I talk about life and living with illnesses, so I am going to talk about PCOS. I want to see it get talked about in school and sex education. I want other people to be able to go to their doctors with the symptoms I had and to get diagnosed easily and without trauma. I want ‘period issues’ and ‘women’s issues’ to be talked about in the public sphere just as much as any other health issues, beyond being fertility issues. I’m unafraid to kick up a fuss about advocating or speaking up about chronic illnesses so our community is heard. So in a way, I’m happy this condition has landed itself on me, no matter how shit it can be. If I can make one person feel less alone, like they have a community, like they feel seen, then it’s all worth it in my eyes.
That’s been my PCOS journey so far. It’s far from over.
It’s a journey I will be experiencing for the rest of my life, and I’ve come to terms with that now. I’m doing all I can to manage my symptoms and I’ve learnt to be loud about my needs that come with this disorder. Despite all I’ve said about getting on with it and managing it, I know that I will have dark days. But that’s okay. As long as I can find brightness in this somewhere, I know I’ll pull myself out. (Ooh, that got a little bit heavy there. Sorry.)
So, here’s to my future with PCOS! I’ve saved you a seat next to my asthma and chronic anxiety. Let’s get on with it.