Living with Prolactinoma: Jessica's story

When I was 18 years old, I started to become ill. I was being sick, had weird leaking from my breasts, experienced severe headaches and generally feeling very tired, faint and dizzy.

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It took all of my energy to just do even the smallest of tasks. After endless tests, prods and trips to the doctors and an MRI scan on my brain, this showed a small growth and I was finally diagnosed with a prolactinoma.

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Put simply, a prolactinoma is a benign, pea sized tumour on the pituitary gland in the brain which causes an imbalance of the hormone prolactin in the body.

At first I was completely terrified.

Hearing the words 'brain' and 'tumour' in the same sentence was overwhelming and I was upset, confused and scared. I had no idea what a prolactinoma was, and a Google search was filled with forums of other women, and even men, discussing how the condition had impacted upon their lives.

The thing that jumped out at me most was the subject of fertility, and the problems that a prolactinoma can cause. In many cases, the hormones produced by a prolactinoma make it difficult for women to conceive, and this is something I really struggled to comprehend.

Anyone that knows me will know how much I love children and that the only thing I've ever really wanted to do in life is be a mum. The thought that I may never achieve what I've always dreamt about is completely crushing, but I know there are other options available and many women have gone on to have children, despite suffering with a prolactinoma.

Nowadays, my life consists of regular doctors’ appointments, three monthly blood tests, 6 – 12 monthly hospital appointments with my consultant, occasional MRI scans and 9 monthly appointments at the eye hospital to check the tumour isn't pressing on the back of my optic nerves.

It’s been almost six years since I was diagnosed with my condition. At first I was told I'd be on tablets for life, but last year I came off them for the first time since 2011, as my consultant wanted to see how my body would react without relying on the tablets.

I went without medication for 12 months, but earlier on this year I had to go back on them as my health had taken a turn for the worse. I started having my original symptoms again; my headaches were getting worse, my periods were irregular and my breasts were leaking.

I’ve been back on my medication since January of this year, and things seem to be going ok, although I feel as though my headaches are continually causing me pain and my periods still aren’t as they should be.

My next check-up is in the New year and I’m hoping to mention everything to my consultant then so he can see if anything more can be done to help with my headaches, although I may go and see my GP before then just to see what he suggests.

I’ll be 24 by the time I go back for my next check-up. Another year older, and another year closer to my dream of having children.

As I get older, I do worry that I’m limiting my chances of conceiving naturally. I know I’m only 23, but I’ve been living with this condition for six years now and, although I haven’t settled down with anyone or am anywhere near ready to have a child, it is something that plays on my mind daily.

I just want to be a normal woman, with normal aspirations. I want to have a family, I want to conceive naturally and I want to live my life without having endless trips to the hospitals and being prodded and tested year after year.

I have to look on the bright-side though, there are so many things I have to be thankful for in my life.

I know I could have had something much worse; there are people with much worse illnesses than me and I count my lucky stars that this isn’t life threatening, it’s just more of an annoyance I guess, and it does wear me down.

On a positive note though, I did something amazing this year…. I travelled by myself all the way from London to Los Angeles, and then went on an epic American road trip from LA to NYC for a whole month! I was out the country for the longest I’ve ever been, and luckily I didn’t miss any appointments or have to have any tests while I was away.

I remembered to take my medication as normal, and I felt on top of the world! I don’t know how I did it, but I travelled to 23 states in 28 days and took part in high energy activities as well as non-stop partying and had the most wonderful time! Yes I did get tired and at times I got a little sick, but I’m so, so proud of myself and now know that I can travel and go off and experience new things and visit new places for weeks at a time without worrying about my health too much.

So that’s my story; I’ve been living with and will continue to live with my prolactinoma condition for the rest of my life, but if I can inspire anyone not to give up and to live life to the full like I do then it’s all been worth it!