Teagan was diagnosed with Prolactinoma in October 2021, at just 19. She was alone in her university room, 250 miles away from home.
Teagan is a student at the University of Exeter. She noticed her migraines getting more and more painful. She originally put it down to majority of her studies being online due to COVID restrictions and the stress of higher education. Though her pain and irregular periods were becoming a cause for concern.
“I’ve had migraines for years, since I was 15. But when I’d gone to uni, the stress and sitting at a screen all the time, it just got to a point where I was like ‘oh I need help’.
I also noticed my period wasn’t regular anymore, I went months and months without it when originally it was quite regular.”
Teagan contacted her universities GP and received quite a bit of luck during a time a GP appointment was hard to come by.
“They did blood tests and it came back that my prolactin was high. They originally thought it was the stress of uni and exams but that they will check again as routine.”
Now that Teagan had completed her exams and could finally enjoy her summer break, a second round of blood tests shown that her prolactin levels had doubled.
“They told me that sometimes it could be a pituitary tumour but that it never is that. But they was like ‘oh yeah that’s not good, we’ll get you an MRI scan.’
Even from the get go I was really lucky in the sense that it all kicked off. I’ve read stories where people have been dismissed or not acknowledge, so I was fortunate in that sense.”
As a lot of people pre-diagnosis, Teagan had no idea what prolactin or a pituitary tumour was. To then be told you have prolactinoma on a Zoom call with your doctor, alone in your university accommodation could only be described by Teagan as ‘really horrible’.
The next steps for Teagan was a 2-year plan on Cabergoline, and fortunately for her, things were going well.
“I was taking it twice a week, I had a check up and my prolactin levels halved.”
As most people experience on Cabergoline, Teagan also encountered Cabergoline side effects.
“I had the typical nausea and so tired that I was just written off. But I’ve had a lot of brain fog as well.
I was doing things like making a sandwich and putting the bread in the fridge or I need Google Maps to drive around where I live because everything was completely alien to me.”
As a second year Civil Engineering student, trying to complete coursework and exams in a time studies were heavily affected by COVID restrictions, was difficult for anyone. Adding a recent diagnosis of Prolactinoma and symptoms affecting your daily life weren’t easy for Teagan.
“I won’t sugarcoat it. It was really hard and I just kept having ‘why me?’ moments. I remember calling my parents crying and asking ‘why am I so unlucky?’
The main issue was just all the online stuff. Sitting at a screen and the lights in the lecture halls would just set off the headaches. I was so susceptible to being triggered and then it would just seem to never go.”
Teagan approached her university’s wellbeing team for extra support during her studies and luckily received that support. But her university experience was still hindered by her diagnosis and COVID…
“In terms of going out and drinking, I just didn’t really. Not in the same way other students were. I had to take the tablet twice a week and I couldn’t drink that day, or the day after with the nausea and everything.
And with the headaches I just didn’t want to ever hang out. I’d just sit in my room not really talking to my housemates much. I didn’t want to be that ‘girl with a tumour’. It definitely did kind of ruin the typical student life and affected friendships and stuff.
I know people would ask ‘why is she always in her room?’ but I just wanted to be in the dark.”
While the university allowed Teagan to postpone exams, there was the difficulty of group work.
“The group project work had just started before the diagnosis and starting the medication. I was warned of the period adjusting to the tablets and that it could make me really ill.
I definitely wasn’t bright and chirpy and full of life, so I had the option to leave and do my own version of the group work. But, I didn’t want to be that girl who’s dropped out of the project and left everyone else to do it and I didn’t want to tell the group about my diagnosis because I didn’t want sympathy or to be treated any different.
I didn’t want to that girl on the course who has a tumour.”
To make her exam season easier, Teagan was able to spread out her exams over the summer. Which she then secured herself a placement at a top energy company, Drax, where she was lucky to meet a very understanding manager.
“Because some of my exams were late, when I went to the interview they asked why. I thought I may as well be honest.
As soon as I said pituitary tumour, my supervisor and line manager turn towards the team manager and straight away his head snaps round and he actually has a pituitary tumour as well!
Like me, he also found out about his condition in his second year at uni and it was comforting to find somebody else who’s been through that so early, and knows. I wasn’t fully on my own.”
You can tell from Teagan’s story the importance of finding a support network that understand how you feel. Especially someone that has been through the same journey as you and can give you some worthy advice.
“It was just a really good environment to come to, and I felt comfortable from the get go with a good support network.”
As part of Pituitary Awareness Month, sharing voices like Teagan’s is vital as she explains:
“I can’t believe how many people don’t know anything about it. Meeting my manager and knowing his experience and meeting him so early on was such a help.
But when I was in uni and in my own bubble, googling others experiences none of the stories were a 20-year-old at uni, in second year, during exam season.
Coming across someone’s story similar to mine would have had a lot of value to me.”
If you have been affected by this story and would like more support please contact our Information and Support Helpline.