Why getting help for PCOS should be easier

Karen had been experiencing symptoms of PCOS since age 13, but it took her a long time to get a diagnosis.

Written by Karen Johnson


I started experiencing symptoms of polycystic ovary syndrome (PCOS) within my first few periods from the age of 13. They were few and far between – around 2 periods per year – so I was really unwell any time I got my period. I was fainting and vomiting for the first 2 days every time with painful cramps that lasted for a week to 10 days.

Getting diagnosed with PCOS

My periods were causing me to miss school which was a concern coming up to my Junior Cert. I was put on the pill when I was 15. There was no mention of possible causes, just that this would help to regulate my periods.

Between the ages of 22 to 24, I started experiencing new symptoms while I was trying to get a diagnosis for gut issues at the time. I put it down to that but once I had a diagnosis and was treating it, I still had a dull ache or stitch sensation around my ovaries, fatigue, brain fog and an impacted mood. 

I went to my GP who referred me for an ultrasound and to see a gynaecologist privately. The gynaecologist said that judging by my scans, I shouldn’t have been referred to see them because there was nothing wrong with me. I felt like I hadn’t been listened to at all and that I’d wasted my money on the consultant’s fees. 

A year on, the pain had gotten worse and I was concerned that I had ovarian cysts so I returned to my GP. I was referred for another ultrasound and a few days later, I received a call confirming that I had PCOS. I had heard of it before, but I wasn’t very familiar with it. I was surprised it had never been mentioned to me at all following over 10 years of issues with my periods.

Managing symptoms of PCOS

After doing a bit of personal research, I learned more about the symptoms, causes and treatment of PCOS. It was then that I realised that PCOS was likely the cause of my menstrual problems from the beginning. 

I was even more surprised that I had never been checked for it. Luckily, the pill is the main treatment for PCOS so it eased my symptoms during my teenage years but now I’m aware that the pain and discomfort can flare up. 

Personally, I feel people with uteruses aren’t appropriately screened for conditions like PCOS and endometriosis and that it can take years to get a diagnosis. This has happened to numerous people in my family and given that many of these conditions are genetic, it should be easier to detect.

I urge anyone who is experiencing severe period pain to speak to a healthcare professional and ask for help until someone listens. It is not okay to be in pain that stops you from being able to lead a normal life. There are treatments for these problems, it is just about identifying the issue in the first place.

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