PCOS Awareness month: My diagnosis story

PCOS-conf-2018Kristine is a volunteer trustee of Verity, a national charity for PCOS

September is Polycystic Ovary Syndrome (PCOS) awareness month. PCOS is a condition that affects 1 in 10 women and AFAB (assigned female at birth) individuals in the UK and 70% of those with the condition don’t know they have it. Snaresbrook resident Kristine Stacke reports

I’m Kristine, I have PCOS. My PCOS journey started at the age of 13 when my periods stopped for 18 months. Before that, I’d been bang on the 28-day mark and my first period started on my first full day of lessons at secondary school… what a way to start! A lack of periods joined some already pretty dramatic mood swings that I started experiencing when I was 9. My mum is a nurse so she tracked everything going on with me and took me to the GP on multiple occasions to discuss this. Time and again it was put down to ‘just being a teenager’ but eventually they decided it was time to refer me on for testing and sent me off to gynaecology.

Low and behold, my appointment came and so did the first period in a year and a half. I was sent off for an ultrasound, internal examination and blood tests (ultrasounds are no longer recommended for teenagers suspected of PCOS). Everything came back inconclusive but with the possibility of PCOS. I was offered the pill to regulate my cycle but turned it down. Fast forward to being 15 and in a mock Biology GCSE exam when a period started (oh the irony) leaving me faint at my exam desk and I changed my mind.

I continued on with the pill for the next 5 years, changing from one to another as none of them quite suited me – mood swings (worse than before), bloating, acne – the list was never-ending. Finally, I settled on one at the age of 19 and I was doing great, but 6 months later I started experiencing migraines, something I had never experienced before. These continued for a number of weeks with me eventually heading off to A and E where my blood pressure was dangerously high and I passed out when they took my blood (still get clammy hands today!). Every other option was ruled out before my lovely junior doctor told me to come off my pill. I now know that those with PCOS are at higher risk of developing blood clots when on the combined oral contraceptive and last year witnessed first hand the devastation that can cause when I almost lost a close friend for that exact reason.

Fast forward another 6 months and I had gone up 2 dress sizes, broken out in acne, developed a moustache and become increasingly depressed… and my periods hadn’t come back. The GP sent me off for all the PCOS tests again and this time they came back with a confirmed diagnosis.

The thing about PCOS is there is no one size fits all treatment, no one quite knows what causes it and there is no cure. At this point, they didn’t really know what to do with me because I couldn’t take the pill anymore. PCOS gets highlighted in the media but usually under the media-friendly symptoms that are heartwarming, positive fertility journeys, or shocking weight gain and male-pattern facial hair. What the media doesn’t always tell you is that PCOS is a life long, chronic condition that you always have to manage. That as a community we have a higher than average incidence of depression and anxiety, body dysmorphia and disordered eating. That there is no ‘one’ specialist that you can go to to help you learn how to manage the condition and you get passed between different clinics. That the most common thing told to PCOS patients is ‘here’s the pill, lose some weight, come back when you want children’. This was what happened to me…but without the pill (and my weight was on the lower side so I couldn’t even be told to lose weight).

I am now 11 years on from my initial diagnosis and just about have my head around my own management. I have had to learn to advocate for myself fiercely – tracking all my symptoms and reading up on NICE guidelines and other regulations before appointments. I have my diet and exercise regime sorted, I have had therapy and CBT to help manage the psychological aspects and I am fully aware of the increased long term risks of type 2 diabetes, cardiovascular disease and endometrial (womb) cancer. It has taken a long time to get there and I am more fortunate than others in being relatively young when I was diagnosed and having stumbled across a supportive community of other PCOS sufferers via Verity, the UK’s only PCOS charity.

My journey isn’t complete though as I haven’t broached my fertility journey yet and I still have menopause to come, an area that is vastly under-researched anyway never mind in conjunction with other conditions such as PCOS. I hope that I haven’t scared anyone away with my diagnosis journey and that if you recognise yourself, a friend or a family member in this story and you aren’t diagnosed that it might encourage and empower you to get tested.

For more information and support, visit the Verity website www.verity-pcos.org.uk or search @VerityPCOS on Twitter, Instagram and Facebook.