My name is Aysa, I’m 23, and I’m a recent volunteer and group leader for my local Verity support group in Brighton, Hove and East Sussex.
I began my journey with PCOS began long before I found Verity. I’ll take you back to early 2017 when I was passed around my doctors like a hot potato. I underwent many tests and scans which led to me being referred onto a specialist. No one could understand why I had such high blood pressure and a number of other symptoms. I was sent to an endocrinologist (hormone specialist) as they thought I might have something called Cushing disease, it has very similar symptoms to PCOS. One thing that didn’t correlate was my irregular periods and problems in my left ovary area.
Moving forward to October 2017 I was still waiting for my appointment at the hospital. Unfortunately, I ended up in a horrific collision involving another car. Paramedics rushed me to the hospital thinking that I had broken my pelvis, thankfully this wasn’t the case but scans did show a 9cm x 12cm ovarian cyst which required an emergency ovarian cystectomy. I nearly lost my ovary and fallopian tube. The cystectomy left me with one ovary working at 50% capacity and one full working ovary – I was very lucky. When I awoke from my operation the surgeon showed me my ovary scans and stated that I may have PCOS, and not Cushing disease, as first thought. I had wondered if this might be the case as after a previous ovarian scan, that I had earlier in the year, a doctor told me that I will still be able to have children, but it may be more difficult and result in me needing to pursue IVF treatment.
Following my operation, an endocrinologist conducted many more tests including urine, blood and scans to rule out other diseases or conditions it could have been. I was taken on and off contraception like a yo-yo until June 2018 when I was finally diagnosed with PCOS – it was a huge relief to finally have a diagnosis and a starting point for receiving help and treatments. I asked the specialist “does this mean I will be able to conceive naturally?’’. His reply was “This is a possibility, but don’t out rule IVF. I will need to see you as soon as you start family planning”. This sent shivers down my spine, I wanted to cry there and then, it was like someone had dragged me through a black hole. All emotion was sucked out of me right there. I felt nothing as I left that room, just empty. I left with a prescription for metformin and was told that I am borderline diabetic and needed to lose weight.
Looking back now I feel that my awful car accident was a blessing in disguise as it led to my diagnosis which could otherwise have been left undetected and caused me further complications. At the time I felt very alone and deserted by my doctors. I felt like I couldn’t be the only one who had been through this and had left their doctors room feeling as though they were on their own to manage their new diagnosis. I googled and read everything I could about PCOS. The NHS website had very little information and all other sources seemed to have limited useful information too. I then tried Facebook thinking that there must be a support group or someone I can talk to about how I was feeling and what I was going through. This is how I found Verity.
Joining Verity has given me hope knowing that there are others going through similar, if not the same, situation as me and made me feel like I have a whole community of people to talk to and share my experiences with. I also feel hope when I hear about others with PCOS having children. I honestly felt drained from all the research. It was such a relief for me to find others like me, in the same boat. The Verity group was, and is, a safe place to ask questions and find information, they have done so much for me without realising it.
After a year in the Verity community an opportunity arose for me to become a local group leader in my area, I jumped at the chance! This was my way of saying thanks to Verity for all their support. Becoming a leader has helped not only me but my friends who didn’t know about PCOS, and also those, like me, who thought that they were alone. I’ve met so many other like-minded ladies and leaders this past year and I no longer feel on my own, I feel happy and supported.
As September marks PCOS awareness month, I wanted to say thank you to Verity for all their help. I have teamed up with Laura Faulkner, a fellow group leader, to set up a fundraising raffle to help raise money for Verity and share the truth about PCOS so that we can support others like us who may be suffering in silence and feeling very alone. We have had so much support with this, many small businesses have donated prizes and so far we have raised over £100!
Where am I now?
I am still learning to manage my symptoms three years after my diagnosis. I take metformin which was prescribed to me by my doctor and I am currently exploring managing my symptoms with herbal supplements and treatments that I feel are right for me. I feel that there is not nearly enough research or understanding of this condition and this is why I have written my story today, to share my experiences in order to help others.
This is my story. I am 1 in 10. PCOS does not own me, I own PCOS.
Check out our JustGiving Page to enter our raffle.
If you would like to share your PCOS story on our blog please email Laura Faulkner at firstname.lastname@example.org