Volunteers' Week: Jess' Story

Jess is a Fundraising Ambassador for The Foundation

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My pituitary story began back in 2011, when I was 18 years old. I had been feeling unwell for a few weeks, with terrible headaches, blurred vision and a general dizzy feeling, as well as constant nausea. I just thought I was a bit run down, but when I started leaking milk from my breasts I knew it was more serious. My first thought was that I was pregnant and I was in absolute shock, but after a trip to the doctors the next day (and several negative pregnancy tests) I knew it was something different entirely. The next few weeks were a series of tests, scans and back to back doctors/hospital appointments. 

My blood tests revealed that the levels of a certain type of hormone (prolactin) in my body were skyhigh at almost 2000 (normal rate is 2-30) so I was sent for an MRI scan on my brain. It wasn't until a few months later that I finally had my diagnosis: I had a prolactinoma. Put simply, a prolactinoma is benign tumor on the pituitary gland in the brain. Hearing the words brain and tumor in the same sentence was extremely frightening as an 18 year old girl and I felt immediately scared and worried for my health and what it would mean for my future.

BuntingMy GP didn't know much at all about my condition, so I was referred to the endocrinology team at the Churchill hospital in Oxford and allocated a specialist who was amazing and explained everything to me. I was put on medication (Cabergoline) and explained I would most likely be on these tablets for the rest of my life. When I got home I spent hours scouring the internet for more information on my condition/medication, trying to find stories of other people who had something similar and trying to understand how much my life would be affected. That's where The Pituitary Foundation came in. They had so many useful articles, plenty of information about prolactinoma's (and other pituitary related conditions) and lots of patient stories from people who had conditions too. I instantly felt better and started to feel optimistic about my condition for the first time. 

I followed the Foundation online for the first few years of my diagnosis whilst I was still processing everything and adjusting to my new life. In 2015, after continuing to follow the Foundation online, I decided I wanted to help and try to give something back to the charity which I'd found was a constant source of support and comfort. I ran my first 5k fun run in Milton Keynes, raising over £350. I then started speaking to some of the Foundation members through social media/email and became more and more fascinated by the amazing work they did to help patients like me. In 2017 I became a fundraising ambassador and later on that year I organised a 'Go Orange' day in my local town to raise awareness of this little known charity. 


2018 saw me take on Mount Snowdon and collectively help to raise over £25,000 which was absolutely incredible and a massive highlight on my volunteering journey. Since then I've attempted Ben Nevis (sadly didn't make it to the summit) helping to raise £12,000, and attended the Foundation's 25th gala anniversary event which raised £20,000 as well. 

Nowadays I volunteer for the Foundation whenever I can, helping with admin tasks either from home or sometimes in their Bristol office, and I try to fundraise and join in with events as much as possible. I absolutely adore being a volunteer for the Foundation and have met so many wonderful people through doing so. On a personal level, my health over the past 9 years has improved massively, with almost all of my original symptoms disappearing. I have regular blood tests and annual check ups with my endocrine team but I'm still on my medication and will be for the rest of my life. It's something I've learnt to accept and live with and, thanks to The Pituitary Foundation, life is a lot better now. I can't thank the team enough for welcoming me with open arms and allowing me to put my time into something that gives so much back. Thank you so much to all of you - I don't know what I'd do without you! Volunteering is one of the best things I've ever done, and I'd encourage everyone who might be thinking about doing it to do the same!