PCOS affects at least 10% of women across the world, but it is surrounded with questions and a lack of information. Its hard to get diagnosed and I know this from personal experience. Even once you are diagnosed, its very overwhelming because of the limited information. Googling PCOS provides sensationalised headlines and scary statistics such as ‘40% of women with PCOS suffer with depression and anxiety’. The reality is, female health is wildly under researched and so much of having PCOS is personal. It took me a long time to get diagnosed, I first started displaying symptoms through my acne when I was 9 (go early puberty!) and I’m 22 now. Some of my doctors are still dubious as to whether I have it.
So what is PCOS? Its short for Polycystic Ovary Syndrome and mainly shows itself through lots of tiny cysts on ovaries. It is often hereditary and can even be brought on by coming off of the pill. The biggest symptoms is irregular periods, weight gain and excess hair caused by higher levels of male hormones. It’s so easy to miss but frustratingly easy to misdiagnose too. My diagnosis came very unconventionally and everyone has their own story. If you wonder whether you do have it, get a scan. If you have no cysts there wait a few months and try to get another scan. Its common for cysts to disappear and reappear on their own.
Writing about PCOS is quite a hard task as its so personal so I wanted to share my story with you. I’ve had acne since I was 9, I’ve got one rogue chin hair that no one really knows about until this post gets shared! I’ve always had horrifically painful periods to the extent I can’t move, I also have a high pain threshold. PCOS runs in my family too. Due to my acne I was put on the pill at age 16. My acne came back at the start of this year and I was taken off of my pill. I was due to start on the acne drug Roaccutane for a second time when Lockdown 1 hit.
Over the first lockdown my acne spread over my face then down my chest and back. My hormones and mood were all over the place, my periods lasted 2-10 days, one month I had a gap between periods of just a week. For years I have asked my doctors to give me an ultrasound to check for PCOS but their answer was always - what is having the diagnosis going to do? Naively, I didn’t see how having the diagnosis would help. If I can implore anyone to do anything through this, it is to go and get your ovaries checked once every couple of years so you can work out what your ‘normal’ is. When lockdown lifted I was due to go on Roaccutane and as my periods had been so abnormal I was sent for an ultrasound. There they found two cysts and one so large it was dangerous. I want to stress how rare it is to have a large dangerous cyst. My gynaecologist has only seen a few people who had cysts as large as mine in his entire career. My cyst was luckily benign but if it had been in my body for much longer I would have lost my ovary. I had surgery back in September and my recovery went very well. Due to COVID the waiting time for this surgery would have been 2 years so I had to go private and I will be forever grateful to my family for covering the cost of this. The best thing about this was having one of the top gynaecological consultants in the UK. He advised me on how to help my symptoms, how to proceed and what birth control options would be best for me going forward. Whilst my diagnosis was very unconventional it does mean that I have a bit more of an understanding over my PCOS symptoms and how my body deals with it. I have always been a mid size girl, I now realise thats in part due to my PCOS (that and my love of chocolate/carbs) and I know should I ever want to have children it will be important for me to consider my options.
If you’re wondering whether you have PCOS go and see a doctor when you can. You may display cysts or you may not. My PCOS symptoms are mild whereas others have very noticeable symptoms. The key thing is to have more of an understanding about your body and what works best for your health. So many women have PCOS, you are never alone.
Isabella is a skin positivity instagrammer, who owns the page @SpottyLittleThing. On her page, you will find posts about skin positivity, self love and empowerment. Isabella also runs series such as Positivitea, where she an other influential positivity advocates discuss real matters.