September is PCOS Awareness Month, so today I would like to share with you my experience of living with PCOS. This is also the second instalment of my ‘Living with…’ series – to view the first instalment about Living with Tourette’s click here.

I was diagnosed with PCOS around 18 months ago when I found that a bunch of my symptoms didn’t fit in with the stereotypical symptoms of my other chronic illnesses. As with all of my chronic illnesses I had to fight to get a diagnosis, with many doctors saying my symptoms were normal or just part and parcel of my other conditions. Nevertheless I knew they wrong and this eventually came to light.

My Symptoms

It is hard to say when my symptoms started, but they consist of hot flushes, hirsutism (excessive hair growth), oily skin/acne and changes to my periods. Of course fatigue and dizziness also play a role, but as they also play a role in my other conditions it can be quite hard to decipher where it’s stemming from at times. I probably started noticing my symptoms when as an extremely cold person even in the warmer months I started noticing the smallest activity left me drenching in sweat. Even going for a short walk outside at a snail’s pace I would get back home and find my back and chest dripping wet like I had just stepped out of a swimming pool. I also started getting drenching night sweats that I had to be seen at the hospital for because it was deemed a worrying symptom that was quickly ruled out for anything suspicious. I had noticed abnormal hair growth in certain parts of my body for a while, but never told anyone out of embarrassment and suddenly the skin on my chest and back started becoming extremely oily and spotty something I had never experienced as a teen. Whilst these symptoms occurred it was probably the change to my weight and periods that made me more aware of the changes to my body.

Weight Worries and Period Problems

At 5’4 I have always had a fairly small frame and my weight had never really been an issue throughout my life except for once or twice and even then I knew of the reasons why. Yet around two years ago I started gaining weight at a fairly gradual speed that I never even noticed it had happened. That was until one day I looked in the mirror and my normal knee length skirt was now sitting on me like a mini skirt because my stomach and hips had made it ride up so much. I looked bigger in my body, but also in my face and I didn’t recognise myself. Whilst I didn’t like how I looked it was the way I felt that affected me the most. I was sluggish and the way I moved felt slow and laboured – an effort that had nothing to do with my chronic fatigue; it was my weight gain. Taking the plunge I weighed myself for the first time in years and found I was clinically overweight something I hadn’t been for a long time if ever. I couldn’t understand what caused my weight gain – sure I probably was eating more than normal, but not at the quantities I would have to have been to gain the amount of weight I had in the timescale.

Then there were my periods. My periods have always been regular as clockwork middle of the road affairs. With them lasting the amount of days at the same severity each month until the last few years. Many people with PCOS have irregular periods or no periods at all, but I am one of the few that still have monthly periods although for how long I cannot be sure. My periods have changed so dramatically that they are barely there and I am scared they will stop before long, but only time will tell.

My diagnosis

Having all these symptoms and having them dismissed by doctors who clearly thought I had enough ‘illnesses’ as it is, I struck lucky one day with a new doctor. I decided to tell her of my bothersome symptoms and she mentioned the idea of me having polycystic ovaries for the first time. She initially referred me to the hospital to have a scan which was denied, and after much toing and froing with the doctors’ surgery I had another doctor go through previous blood work I had done which were abnormal alongside my symptoms to receive the diagnosis of PCOS.

As with all my chronic conditions my doctors told me there was no treatment or cure for PCOS and it was something I had to learn to live with. The only way I started to truly understand what having PCOS meant was by doing my own research and reading information from charities such as Verity which helped me to understand my symptoms better.

The only advice I was ever given by my doctors was to lose weight which I am proud to say I did. In total I have managed to lose three stone and am back to to a healthy weight for my height although it is a constant battle to keep it stable.

Going Forward

My biggest fear with PCOS is fertility. As I mentioned my periods have changed, but whilst I am still menstruating every month my fertility won’t be checked. Having PCOS by no means translates as not being able to conceive because lots of women do, but personally for me it may not help matters. I have other health issues which have potentially raised fertility as a concern and I can only hope everything will work out in the end.

You can’t see PCOS and like most chronic illness it is invisible to others, but for sufferers it can be a daily struggle. Spread the word and talk about PCOS alongside all other conditions because the more people talk about it the more people will understand it. I certainly didn’t know much about it until I found out I had it.

My message to other PCOS sufferers out there is that whilst PCOS has its challenges it doesn’t have your life and it definitely doesn’t define who you are. Remember you have Power, Courage, Optimism and Strength – you are a PCOS Warrior.

xx

More instalments in the series are now available – click the condition to find out more: UCTD, Fibromyalgia, M.E/CFS and Mental Health.