Dominika's story - Volunteers' week

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Believe you can and you’re half way there.

Theodore Roosevelt

It all started with suspicious symptoms

IMG 20190504 100034 433 002 My name is Dominika Butler; I am a scientist and like many of you – a pituitary patient. My volunteering journey started in July 2015 when I contacted Rosa at The Pituitary Foundation and asked if I could be of assistance, but let me start from the beginning…

In 2010 I was a PhD student at the University of York and was just about to get married when I noticed some disturbing health symptoms. I had daily headaches, my periods stopped and I started producing milk! And no, I wasn’t pregnant. My GP started to investigate and sent me for a blood test with a particular interest in prolactin levels.

 

Wedding in Cyprus was a great distraction

However, I had different things on my mind. I was getting married in Cyprus, so I didn’t want to think too much about potential health issues!

My husband and I got married in July 2010 and soon after we came back from our honeymoon I was referred to have an MRI scan at York Hospital. The news came a week later – they found a tumour, a pituitary macroadenoma, which back then didn’t mean much to me. I looked up general information on pituitary tumours and found out I might not be able to have children and that really worried my newly married husband and myself. At that time I haven’t heard of The Pituitary Foundation, so my friends and family were the only support team I had and they were amazing. 

My endocrinologist put me on medication to shrink the tumour. However, the side effects of the drug made me very ill and so I really wanted to stop the treatment. 

 

A ray of sunshine 

IMG 20180430 204744 212Unexpectedly, after 6 months of treatment I got pregnant! It was such a relief to discover we could have children after all! I was taken off medication and for the first time in months I felt fantastic: no nausea, headaches or sickness!

I was closely monitored during the pregnancy with additional appointments at the clinic. During one of my hospital visits I came across The Pituitary Foundation leaflets and discovered a wealth of information on their website, which was really useful.

Not long after the birth of our second child I was referred for another MRI scan result of which truly shocked us. The tumour shrunk by half all by itself. I couldn’t believe my luck. I felt that I could do anything, I had my life back and I wasn’t going to waste a single minute of it!

 

My volunteering journey began

I passed my PhD exam, I got a job and I decided to join The Pituitary Foundation to help patients (like myself) along their pituitary journey. I became Area Co-ordi20171030 095124nator and a Campaign Volunteer and I created the York Pituitary Support Group. 

In my role I organize meetings for pituitary patients, family members and invite professional speakers from the NHS. We had the pleasure to host Mr Anuj Bahl, neurosurgeon from Hull Royal Infirmary who gave a couple of amazing talks about pituitary surgery. We also had a visit from Dr Steven Dykes, the Deputy Director of the Yorkshire Ambulance Service who showed us how to make an emergency hydrocortisol injection and taught us how to perform a CPR. 

I organize pituitary awareness stalls, fundraising events such as cakes and books sales which are always very popular and bring the essential funds to support The Pituitary Foundation and to run the York Group. 

The most amazing part of volunteering for me is meeting people and helping them. Sometimes all they need is a chat when they just got diagnosed and are really anxious about the future. Other times they want to know more about the condition they have been diagnosed with and how it could be treated. In the York Group we support each other, share our stories and listen to others.

Volunteering has become a part of my life, it has been an amazing and rewarding experience. I met many fantastic people who shared their incredible stories with me and became my close friends. I would like to thank The Pituitary Foundation for allowing me to join as a volunteer, it has truly changed my life. 

 

Read more about The Foundation's volunteer team here.