My name is Katy, I am 36 years old and have a daughter of 2 years old. When I first started having symptoms, my daughter was 8 months old, and put a lot of these symptoms down to my body adjusting after pregnancy. However, after a while I knew something wasn’t right.
In January 2022, I went to my GP with concerns of having no period for 5 months and still producing breast milk (6 months after stopping breast feeding). I also had very intense headaches, but I put this down to the stresses of a newborn, sleepless nights and so on!
My GP sent me for blood tests to test my prolactin levels, and they came back 1,568. It was at this point I was referred to an endocrinologist.
I still didn’t know what exactly I was being tested for, but when I met my endocrinologist, everything was explained. I was told I could have a pituitary tumour, and will be referred on a 2-week urgent rule for an MRI scan. Within a week, I was having my first MRI scan and I would be lying if I said it was easy, but I got through it.
In April 2022, I had the results of my MRI and was told there was something there and I needed an MRI with contrast to look into this closer. I had the MRI with contrast a few weeks later, again, not easy but I knew this had to happen to get to the bottom of everything.
I had a follow up review with my endocrinologist in May 2022 and this is when everything was explained and next steps were discussed. It was confirmed that there was a 4mm tumour (99% sure it was benign) and it was sitting on my prolactin gland, which is why my prolactin levels were so high and I was still producing breast milk.
We discussed treatment options, and agreed the next step was to trial a medication called Cabergoline. This is used to treat high levels of prolactin and pituitary prolactinomas (tumours of the pituitary gland).
I was to trial the medication for 3 months, with blood tests and another MRI after this time, then to come off the medication for 3 months and again blood tests and another MRI, to compare the results. When I was on the medication, my period started and the results of the blood tests of my prolactin levels went down to 36! I felt slightly better, as I felt like my hormones had balanced but my headaches were bad, if not worse.
When I came off the medication, things started to go downhill. I was actually off the medication for 7 months in total. My prolactin levels went up to over 2,000 (the highest they have ever been), I started producing breast milk again and my headaches were unbearable. I was having dizzy spells, I couldn’t play with my daughter without feeling faint, I had severe fatigue and could not stay awake past 8pm. It was the longest 7 months of my life! I felt so guilty for not being the Mummy and partner I knew I could be, and just wanted to be better for my family.
The results of my MRI came back and I was called in to discuss with my endocrinologist. I was told the tumour had increased in size and the medication wasn’t working. I was referred to a neurosurgeon and within 2 days I was told Endoscopic Pituitary Surgery was the next option and 10 days later I was admitted to hospital to begin the process.
On the 1st June 2023 I had surgery, and I can honestly say, although it was daunting, scary and going into the unknown, it is the best thing I have ever done. The Neurology team were incredible, I was looked after very well and I was explained what was happening every step of the way.
The surgery itself took 2-3 hours, and the tumour was removed through my nose. It was a clean removal and I still have my pituitary gland! The recovery process was better than I thought, my nose was sore and I couldn’t blow my nose for 2-3 weeks and was douching 3 times a day for 6 weeks but I began to feel the changes almost straight away.
Whilst I was still in hospital (4 days post-surgery) I had my first period, naturally! My headaches had calmed down straight away and had no galactorrhoea whatsoever.
My biopsy came back and it was confirmed as a benign pituitary tumour. Moving forward, I have to have MRI’s every 6 months for 2 years, and then yearly to make sure the tumour doesn’t come back.
I am now 8 weeks post-surgery and I have never felt better. I have not had to take any pain relief for headaches, as I don’t have any! My menstrual cycle is back to normal, my energy levels are back up and most importantly, I can play and have fun with my daughter without feeling dizzy and unwell! I feel incredibly grateful that I had the opportunity for surgery and I have my life back.
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