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How Having PCOS Shaped Me As a Young Person

TW: Periods including mentions of blood, dismissive doctors.

Polycystic ovary syndrome (PCOS) is defined by the NHS website as ‘a condition that affects how the ovaries work.’  Its most common symptom is periods being irregular or heavier compared to the “norm”, which is due to hormone imbalances within the body. 

However, as someone diagnosed with PCOS, I know that it involves more than just heavy periods. PCOS is a fundamental part of my identity. It has a wide range of implications, and it is something that heavily impacted how I grew into a young adult. 

In early adolescence, I knew I was different from my peers. My friends would experience heavy periods, but this could usually be solved with paracetamol or would only happen occasionally. My periods kept me off from school for days. I would pass blood clots the size of grapes and I would need to go to the toilet every twenty minutes. Sometimes, my periods would last for over two weeks.

On top of this, I would suffer from fatigue, migraines and heightened anxiety which would occur in the weeks before and after my period. Even if I had no bleeding when my periods were meant to happen, I would still feel unwell. As a young teenager, I felt confused and worried as to why this was happening. It hadn’t been something that I was taught about in school. 

Another common symptom of PCOS is excess androgen, which is defined as high levels of “male” hormones. It is believed that this hormonal imbalance can cause mood swings and high levels of anxiety. It can also present itself physically, in the form of excess facial and body hair. 

I developed excess facial hair at the start of my adolescence. This is something that I grew insecure about during my time in secondary school; I was scared that I stood out and my peers would make fun of me. Occasionally, some did. 

Feeling insecure is almost a prerequisite for teenagers, but I felt insecure in a different way. I felt like my body was breaking convention and developing differently. I wasn’t alone in feeling this way either. A PCOS study conducted by L.Cronin in 1998 found that feeling ‘self conscious all the time’ and feeling ‘a lack of control over the situation’ were very common.

But I didn’t know that I had PCOS at the time. I had many nights where I would trawl through the Internet, speculating what might be wrong with me. I had such a large volume of symptoms that I started to think that I had multiple things wrong with me. 

This is a key reality of PCOS: it contains a multitude of symptoms that may not even relate to your period. The symptoms also differ from individual to individual, making it an illness that’s hard to define, even for medical professionals. The British Columbia Medical Journal, for example, describes PCOS as an illness that is ‘still not completely understood.’ 

My symptoms were worsening by the time I reached the age of sixteen. I had started sixth form and was suffering from fatigue and muscle ache as well as heavy periods. I also had episodes of unexplained anxiousness. I knew I needed answers. 

I booked an appointment with my local doctor’s surgery to discuss my symptoms. My concerns were dismissed by my doctor as ‘typical teenager problems’ which would go away in the next few years. The refusal by a medical professional to look further into my symptoms prolonged my worry and left me with no answers. 

I was made to feel like an overdramatic, hormonal teenager who was throwing a tantrum as they couldn’t cope with their body. This knocked my confidence and planted doubt in my mind about the reality of my own suffering. 

Were the symptoms I was experiencing just the reality of having ovaries? Is this what everyone went through? It wasn’t something that I normally discussed at the lunch table with my sixth form friends; perhaps those with ovaries had all been feeling the same way? 

Nevertheless, my doctor prescribed me the combined pill in order to ease my symptoms and to finally make my periods regular. This was the start of my long, and often painful, journey to try and find a type of medication that helped just my periods.  

My other symptoms, which I described in full detail to my doctor, were dismissed. None of the medications worked that I tried over the years, and sometimes they made my symptoms worse. 

The COVID-19 pandemic gave me a chance to think about things and renew my urgency of seeking a diagnosis. In May 2021, I booked an appointment with a private doctor’s surgery. This was largely due to how frustrating my experience with my local doctors surgery had been over the years, and with my symptoms only worsening.

After multiple appointments, I was diagnosed with PCOS. A weight was lifted from my shoulders and everything fell into place. For the first time, I had confirmation from a medical professional that no, what I had been experiencing for years was not normal. 

As a young adult, I have learnt to accept my PCOS. I know that I will have heavy periods that will make me miss appointments. I will have unexplained episodes of intense anxiety. I know that I will have less energy compared to the rest of my peers. This was something that was highlighted to me at university, as I realised quickly that my body did not have the capacity to undertake consistently busy days. 

Despite this, I’ve begun to feel proud about my diagnosis of PCOS. 

The realities of living with PCOS are not often spoken about. I did not receive clarity until my late adolescence, but with the right education and greater PCOS awareness, we can change this for young people. 

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