A prolactinoma is a benign (noncancerous) tumor of the pituitary gland that produces a hormone called ‘prolactin’. The pituitary gland is located at the base of the brain, the size of a pea, and controls the production of many hormones.
Prolactin signals a woman’s breasts to produce milk during pregnancy and breastfeeding. Having too much prolactin in the blood, a condition called hyperprolactinemia, can cause infertility and other problems.
I recently discussed my journey of living with a prolactinoma for 10 years during pituitary awareness month. Today I’m so honoured to have the opportunity to feature a similar story from beautiful Jess Buck from Journeys with Jessica.
Jess is the most inspiring lady I have met through blogging. Her sense of wanderlust, zest for life, courage, kind heart and travels are beyond inspiring to me. It has been so special to connect with Jess through our illness, and this interview speaks such volumes to the positivity and courage that radiates through everything Jess does.
I hope this discussion of living with a prolactinoma with Jess gives you the strength to find your own self-care resources for rest and light and healing whatever you are facing.
Most importantly, I also hope this interview serves as a reminder that you are never ever alone as dark and lonely as it sometimes seems living with a chronic illness. A huge thank you to Jess for her heart and courage in sharing her story.
Hi Jess! Please can you give my readers a quick introduction to you, where you live and what you do?
Sure! I live in Oxfordshire and I work full time for a luxury travel company and work part-time as a travel blogger running my own website, Journeys With Jessica, as well as being a proud ambassador for The Pituitary Foundation too!
How long have you had a prolactinoma and how easily were you diagnosed?
I was diagnosed with my prolactinoma 8 years ago, when I was 18, and it took the best part of 6-12 months to get diagnosed. At first, the doctors were baffled and didn’t have a clue what was wrong with me, until an MRI scan showed that I had a small tumor on the pituitary gland in the brain, and then my prolactinoma diagnosis became official.
What symptoms did you have?
I was sick a lot, throwing up, needing the toilet all the time, having dizzy spells and horrendous headaches, often feeling sad and having weird mood swings, but the biggest symptom was lactation from my breasts – I was literally leaking breast milk and couldn’t work out why! Doctors presumed I was pregnant and made me take multiple tests that all came back negative, but I was so scared and confused as I just didn’t have a clue what was wrong with me!
What does living with a prolactinoma mean, in terms of your day-to-day living?
Day to day, my life isn’t affected hugely, I feel physically fit and healthy and look totally normal, although I do have good days and bad days. Sometimes I’m totally fine and even forget I have a condition, other days my headaches are so bad I can barely open my eyes.
There are times when I cry for no reason, or I can barely get out of bed because I feel so low. There are other times when I’m happy and full of life and feel so lucky to live the life that I do. That’s what’s the hardest thing about my condition – there is no in-between and it affects me in so many different ways that aren’t physically visible to my appearance from the outside.
What does having a prolactinoma entail in terms of medical visits and medications?
Because my prolactinoma is a micro one (about the size of a pea) I’m lucky that I don’t need to be monitored as closely as someone with a macro-tumor. I go once a year to the endocrinology ward at my local hospital in Oxford and then go for blood tests every three months to track my prolactin levels.
I also go for regular visual field tests either at the hospital or at the opticians so I can check that the tumor isn’t causing problems to my optic nerves, but so far so good! I have been on a medication called Cabergoline for the past 8 years and it’s successfully preventing the tumor from growing any more.
I’ve been told I’ll be on the meds for life, but when I want to have children I have to come off them immediately, so I have no idea if my tumor will grow more at that stage or if it’ll remain the same size despite not being treated by Cabergoline. Being pregnant naturally increases the levels of prolactin in your body, so I may be totally fine, but I may have to be put on different medication, which is something I’ll have to discuss when the time eventually comes.
What kind of support do you get from family or friends? Has your illness affected these relationships?
My family and friends are amazing. From day one they’ve supported me and understood what my condition entails and how it affects me. I wouldn’t say any of these relationships have been affected if anything they’ve got stronger and brought me closer to people!
When you’re having a bad day with your prolactinoma, what does this entail, and what things help the most?
My headaches are the biggest thing for me. Some days they are so bad I can barely open my eyes, and I struggle a lot with that, especially when I’ve got to go to work and sit in front of a computer screen for 8 hours a day!
Sometimes I’ll feel sick and the nausea will be quite difficult to deal with, other days I’ll just wake up in a bad mood and feel really low all day but will have no idea what’s caused it. When I’m feeling like that I’ve learnt I need to switch off and give myself time to reflect and start thinking about why I’m so low. Often it’s because I’m fed up of my headaches, but sometimes it’s because of no reason at all and that’s definitely something that’s hard to deal with. How can you make yourself feel better if you don’t know what the problem is?!
My condition is complicated, and it’s only now, after 8 years, that I’m fully understanding what each of my signs and symptoms involves and how I can manage them when I’m having a bad day.
What is the hardest and/or best lesson your condition has taught you?
To live life to the full, to not let anything hold you back, and to believe in yourself. Don’t give up – every day is a gift and waking up being able to breathe, walk and talk unaided is something we should never take for granted.
How do you find living with a chronic illness affects mental health?
I have good days and bad days, but when I’m having a bad day and I’m feeling down I do struggle to see the positive side of things and can be quite negative. I think that’s my hormones but it might be in my head too. When I’m feeling like that I remove myself from social media and try to feel better by surrounding myself with people who are good for me.
What are your goals and ambitions despite living with a prolactinoma?
My goal is to still travel as much as possible and to enjoy life to the full. I want to continue to have a successful blog, a successful career in the travel industry and to make myself proud of not letting my illness hold me back.
My ultimate life goal? All I’ve ever really wanted is to be a mum, so if I’m lucky enough to have children despite my condition causing fertility problems, that would make all my dreams come true.
What advice would you give to anyone reading this living with a chronic illness?
Please talk to someone. It could be a friend or family member or a doctor or counsellor- whoever it is please talk. Don’t keep things bottled up- sharing is caring and I promise you that it will help massively when you’re trying to come to terms with something that you’re finding difficult.
What is one/some of your favourite quote(s) for daily inspiration?
My favourite quote has become a bit of a motto of mine, and it’s actually a song called ‘Hold On’ from 80s band Wilson Philips:
‘No one can change your life except for you’
It’s that simple- only you can change things, or how you deal with things, and as soon as you realise you can take control of your own destiny, you’ll start to believe in yourself so much more.
Finally, in what ways can our readership, friends and family do to help advocate for you, me and anyone living with pituitary conditions?
I hope that by talking about our conditions and highlighting the signs and symptoms of them we can raise awareness of pituitary problems as a whole and start giving support to those who need it, especially newly diagnosed patients who may be feeling overwhelmed at the prospect of dealing with their conditions. The most important thing is to make people feel that they are not alone!
A huge thank you to Jess once more for opening up about parts of her journey with her daily life living with a prolactinoma and sharing such love and light through her methods of management.
Sometimes the choices and compromises living with a pituitary condition seem unfair and without reprise. I’m so inspired that through this discussion with Jess that whilst living with a prolactinoma is an extra challenge in life, it also teaches us that much more, and gives us a perspective that we might not have had otherwise.
Just a quick disclaimer that these posts are solely for inspiring wellness based on my/others I interview experiences; this is not medical advice. For more information, and support please head to the Pituitary Foundation.