Emily's Story - Prolactinoma

Hi, my name is Emily and I was diagnosed with a Prolactinoma nearly 9 years ago, when I was 19 years old. My Prolactinoma at the time of diagnosis was 1.4cm wide and was classed as a Macroprolactinoma. It has since reduced drastically and at the time of my last MRI scan measured around 3mm, sitting firmly in the Microprolactinoma category.

I wanted to share my story to raise awareness of pituitary problems in young women and the havoc it can wreak on our bodies, but I also want to share how much the treatment I have had has had a positive impact on my life and allowed me to live as normal life as anybody else, Prolactinoma or not.

Firstly, I will talk about pre-diagnosis. I never really had normal, steady periods and I thought I was just a ‘late bloomer’ as some might say. I had a period every 3-6 months and was worried about this, but obviously not worried enough to seek medical advice, which I should have in hindsight. When I was nearing the age of 19, I started to get pains in my breasts, and I noticed that I was lactating sometimes. I spoke to both my mum and sister about this and we established that I was not pregnant and convinced each other that maybe it was just hormonal changes. I also suffered with cracking headaches daily and I was around a stone heavier than I am now, a stone that I just could not shift. I have never been overweight or dieted, I have always looked after myself and exercised. But as soon as I started medication, it was like that stone of weight fell off me. When you have a Prolactinoma your body essentially thinks it is pregnant and so mine lay down that extra weight. 9 years on, I have never really gone above the weight I am now and have never regained that dreaded stone. I knew in my heart that something wasn’t right, and I know now to always trust my instincts!

A short time later, my sister called me as she was watching an episode of embarrassing bodies. There was a man on the show who was suffering extreme headaches and was lactating. It turns out he had a Prolactinoma – something I had never heard of at the time. Although it was a man on the show, I knew straight away that I had the same. My lack of periods made me even more certain.

I went to the doctors the following day and was sent for blood tests. The blood tests showed that my level of prolactin was nearly 15,000 miu/L – the normal level for a non-pregnant female is 300-400 miu/L. I was referred to an Endocrinologist and sent for an MRI scan and put on medication, which I still take today. A lot of people with Prolactinoma’s only need treatment for a few years but my little adenoma seems stubborn! I have had trials off the medication but my Prolactin levels always rise more or less straight away. Despite this, I have near enough no side effects from the medication and my initial symptoms were alleviated within six months. I now regularly have periods and the future looks bright for me!

I did not even know what a Prolactinoma was until I saw that man on embarrassing bodies. I am writing this story to encourage people not to ignore symptoms, but to get them checked and always trust your instincts!