By definition, a prolactinoma is a prolactin-producing tumour of the pituitary gland and doctors currently don’t know what causes them.
When I turned 15, I still hadn’t got my period, so my mum called up the doctors to arrange some tests just to make sure everything was all okay. I remember having the tests thinking that nothing was going to come from it, however at a dance class on the 2nd of December 2019, I got a call from the doctors asking me if it was an alright time to talk. I got told that some bad results came back from the tests and that I had prolactin levels in the thousands (when they are meant to be around 500-700 mlU/L.) Apart from that, the doctors still were not certain what was causing this and told me to prepare for the worst. I remember trying to act calm for the week that the future of my health was uncertain, but all I wanted to do was hide away from the world and cry – it was a very tricky time! Thankfully, it wasn’t too long until I was told that they suspected it was a prolactinoma. Following the weeks of the initial results, I underwent many blood tests and a few scans to have more of an idea of what was causing these high prolactin levels! I was then diagnosed with a Macroprolactinoma, which in simple terms means a big (over 10mm in diameter) growth on my pituitary gland which is messing up these hormone levels! Now I had this diagnosis, I was able to calm down as I knew it wasn’t anything cancerous or fatal.
To help treat the growth, the chosen primary treatment was to take a medication called Cabergoline which will help shrink the growth and get my prolactin levels back to the normal range. I started this medication in February 2020 and got my period the following month which showed the medication was working. While I would love to sit here and say how everything went smoothly after being put on this treatment… it would be a huge lie! To begin with, spotting side effects of the tablet was more difficult as the world was in lockdown, so I wasn’t going out as much! I began to lose a lot of weight because of the tablet which then spiralled into body image issues and mental health troubles and on top of this, I got headaches and felt very tired sometimes.
When I first got diagnosed, I was informed by my doctor that the treatment process would take around three years, so I was looking forwards to turning 18 as that was the age, I would supposedly be free from all these health issues… but sadly this was not the case. Fast forward to September 2022, a month before my 18th birthday, I had one of my bi-annual hospital appointments with my doctor to discuss my most recent set of MRI results. It all seemed to be going normally until he began talking about when/if I have children, I will have to come off the medication and then go back on it and it won’t be a 3-year treatment, it will most likely be with me for life. This took a lot of processing, and I wasn’t doing physically or mentally doing well at all. I missed school as my mental health was poor and I was constantly tired.
At a similar time to this, everything felt like 100 times more effort and I just wanted to stay in bed all day. I had also just been diagnosed with slow processing and memory issues all because of the tiny tablet I took once a week. This constant exhaustion carried on for months and really affected school, work, and extracurricular activities like dance. I booked an appointment with my doctor and the doctor I saw had a close friend with a prolactinoma too! It was in this appointment where I learned about how tired people get on this medication and how lots of people tend to need naps and recovery days due to this.
This tiredness had and continues to have a huge effect on my everyday life; however, I try not to let it stop me! I am now on a reduced timetable at school, so I only must go in really when I have lessons to help improve my attendance. On top of this, I have slightly reduced how much I dance however, I took my intermediate modern exam back in December 2022 and achieved a high merit! I also love travelling and I was fortunate enough to go on a winter break to Amsterdam! While it was quite physically demanding, I had napped every day I was there and had to have a few recovery days when I got back where I found it hard to even go on a short dog walk – but I try to not let this phase me as I can’t change it and must adapt! I have also been able to do some other awesome things since getting diagnosed, like becoming a PADI qualified open water diver, being awarded the Youth Ocean Optimist award by the Marine Conservation Society as well as taking a trip to the US in October 2022!
However, not a lot of people are aware of how much the medication and condition can affect me which is why I am determined to help spread awareness about prolactinomas as well as other rare pituitary diseases that could affect people’s lives just like my prolactinoma has affected me.
I am so incredibly grateful for the doctors and nurses who are supporting me through this, as well as my friends, family, and the Pituitary Foundation! And I am also grateful for my partner, Daniel, as he made me realise, I wasn’t alone… in a unique way! Back in November 2022, Dan presented me with a package, and inside this package was a painting by an adorable rat named donut who, like me, has a prolactinoma and is on Cabergoline!
Throughout the entire journey with my prolactinoma, I have felt alone with my condition and felt as though no one truly understood what I have been going through, but somewhere across the Atlantic, there is a little ratty also undergoing the same treatment as me as well as many people across the globe. So, if you have a prolactinoma like me, just know that we are in the same boat as this little ratty – you are not alone!
Lucy Davies 18, Dorset, UK