PCOS Story: Tara Johnston trusted her instinct when seeking her PCOS diagnosis

Hi, I’m Tara Johnston, I’m 20 years old, an English Literature student at De Montfort University and I have very recently been diagnosed with PCOS. I wanted to write this blog for Verity because I believe that PCOS and the issues and symptoms that arise due to this condition are too often overlooked by both society and, unfortunately, even medical professionals. 

I’ve never had regular periods and I’ve been suffering from breakouts of cystic acne since I was as young as 12. For a while I just associated these symptoms with my age and thought it was all normal until I began to get older and these problems weren’t going away… if anything they were just getting worse. I began to suspect PCOS around two years ago, however, when I explained to my doctor that I thought I had PCOS whilst discussing possible treatments for my acne, it seemed that my concerns were dismissed. I was told “If you have PCOS there isn’t really anything we can do, so no point looking into it really”. My doctor was a pregnant woman, I was shocked and upset she could so easily drop my concerns like this.

I was lucky that when I saw another doctor and expressed my concerns about PCOS she agreed to send me for a blood test to check my hormone levels, yet strangely the results came back completely normal. I wasn’t going to leave it at that. I was now starting to have pelvic pain in addition to irregular periods and acne. I needed to figure out what was going on with my body so I asked the doctor if I could please have a pelvic exam. At first she was reluctant but eventually agreed to arrange for me to have an appointment. 

A week or so after the examination, I met with my doctor to discuss the results where she told me that I did have PCOS. I had a lot of mixed emotions. Obviously, I felt slightly smug knowing I had been correct all along.Nobody knows your own body better than yourself, always remember that., There was one part of me that was happy, I could now do my research and learn what I can do to control my symptoms, but there was another part of me full of worry and dread, thinking “Will my acne ever go away?”, “Will this affect me having children?” and then there was a part of me that felt extremely disheartened. I felt as if my body had been working against me instead of with me. To my dismay, my doctor said to me “It’s a surprise that you’re not overweight.” PCOS affects each woman differently, you don’t need to fit a certain mold to have this condition.

At least now I have answers. I have been prescribed the contraceptive pill Dianette, which is used as a hormone treatment for women with severe acne or excessive hair growth. My acne has started to clear up significantly since taking this pill. Acne has honestly had such a detrimental effect on my mental health and wreaked havoc on my confidence. I was becoming a recluse because of it and I cried most days, I couldn’t go on like this. I decided to make an instagram account “acne_journey_20”, dedicated to helping myself and others with acne. The account now boasts over 1,800 followers. I’m so proud of this account because I’ve been able to connect with other women who also have PCOS and suffer from acne. We’ve been able to talk about the impact PCOS and acne has had on our daily lives, how we cope and most importantly we don’t feel alone in our journeys. In addition to online support I’ve been very fortunate to have my friends, who have really been there for me and who listen to all my worries. My friends wanted to learn more about PCOS when I brought it up in conversation. I’ve also been overwhelmed from the support of my boyfriend Elland who has been outstanding, listening to all my worries from acne to future infertility. Having people to talk to can really help calm your nerves and insecurities. 

Finally I’d like to just say to please listen to your body as nobody knows it better than you, we shouldn’t have to push doctors to listen to us but unfortunately sometimes we have to. I also hope that you have a good support system of loved ones to help you through the tough times. I’m wishing you the best of luck in your journey with PCOS whether you are facing mental health issues, a skin condition, weight issues or anything else. We are all in this together. 

Thank you for taking the time to read my story, lots of love, Tara x

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