My name is Serena I am currently 23 years old. My story is quite peculiar and not typical story for those diagnosed with Prolactinoma. This is a benign tumour in the pituitary gland it is non-cancerous. On the 5th of May 2020 at 19 years old, I was diagnosed with Prolactinoma. I remember this day so vividly, a few days after doing an MRI scan, the doctor had called me and said to me “if you were to have any tumour this would be the best one to have”. I remember sobbing and crying my eyes out I didn’t want to have a tumour. It almost felt like no one around me understood and my whole world was shattered. I think it was the fact that, because it is a hidden condition it made my feelings invalid.  Prior to my diagnosis, I did not have periods for months, but I was not sextually active. As a result of this, my doctor was concerned and that probed her to action some blood tests to check my hormone levels. When the results came in, they found my prolactin levels to be more than 5,000 µg/L. During the course of this diagnosis I experienced symptom ranging from: no periods, nausea, feeling of exhaustion, weight loss, anxiety and depression, insomnia or wanting to sleep all day, galactorrhoea, headaches, constipation, bloating, early satiety, loss of appetite at times and nausea at night. These symptoms had intensified, over two years, after I started treatment and started to get better. Due to Lockdown and Covid-19 my treatment and multidisciplinary team (MDT) meetings were delayed.

In spite of the diagnosis I refused to let it affect me. Although, my response led to me in denial. I never really thought about it, until I had to attend Dr’s appointments to do blood tests and scans etc. Unfortunately, I was unable to tolerate any of the dopamine agonists (Bromocriptine, Quinagolide and Cabergoline). These dopamine agonists caused severe disruption in my mood, alongside with nausea and extreme tiredness etc. The only other option was to have surgery to remove the micro-prolactinoma as it was 7.6mm in size, yet caused so many problems in the way my body functioned. The surgery I had was called transsphenoidal endoscopic surgery. Due to the small size of the tumour, my Endocrinologist had major concerns that, if I had the surgery it is likely that all my hormones would be ruined as a result and I would be in hormone replacement therapy the rest of my life. The thought of this scared me.  I had 2 MDT meetings where the Dr’s and surgeons discussed my case to see the best course of action. In those meetings they decided to not do surgery. After hearing the news, I was very distraught. At this time, my symptoms were just getting worse and I just wanted to feel better. April 2022, I had a final MDT meeting with Dr’s and Neurosurgeons and Charring Cross Hospital and they had decided to take on my case and do the surgery on me. I had the top surgeon Dr Mendoza who has a rating of 4.9 stars. This reassured me that I was in good hands.

Fast forward to my surgery day, 18th of August 2022. This was 5 days after my 22nd birthday. Unfortunately, I was unable to do anything for my birthday because I had to self-isolate. However, I received gifts and a balloon in the post, that made my birthday very special! I was admitted to a private ward as there was no space in the actual ward. At this point I was still in ‘la la land,’ not fully registering I was about to have brain surgery. I remember, being wheeled into theatre after changing into the hospital gown sobbing and crying my eyes out. I took in the gas and air, and I was knocked out and did not remember a thing. I was told the surgery took about 3-4 hours. When I had regained some sort of consciousness after the surgery, I had woken up and, there was a crowd of people around me and a nurse called my name and said: “Serena, your surgery was very successful.” I am so thankful to God.

I had undergone such a major surgery and my recovery was very traumatic. I had to relearn how to walk, and mobilize and needed help with everything after surgery. I do not say this to scare anyone as this is ultimately my story and this is not the norm. I am happy to say that months, weeks, years went by and now I standing here today testify that none of my hormones were damaged, I am now healthy and fit, and I do now have regular periods.

I want to encourage anyone who has been diagnosed with Prolactinoma or any health condition that there is light at the end of the tunnel I am living proof of this. I saw no light at the end of this my recovery was very absurd and slow. However, I made it through and I am alive and breathing today. I thank God. I would not change my experience for the world, as it has made me who I am today. Now I can help many others and educate people on the pituitary condition Prolactinoma. I have never heard about it until I was diagnosed.

I would like to end off by thanking The Pituitary foundation and the Endocrine Nurse’s for the endless support and allowing a safe space for me to cry and express how I was feeling. You guys showed me nothing but love and there was no judgment. I would also like to thank God for sustaining me and keeping through this difficult time.  Lastly, I would like to thank anyone and everyone who had supported in up until my diagnosis to now. I really appreciate it from the bottom of my heart. I urge and encourage anyone who has received this diagnosis to keep pressing on. I know it is not easy; I am living proof that it does get better and it isn’t all doom and gloom. God cares and loves you and you will make it through. Sending loads of love.