September marks 16 years since I had my operation to remove my Prolactinoma, and I thought now would be a good time to share my story.

In 2007, having been trying for a baby for over a year, I was sent to have tests for infertility. Everything came back fine with the exception of my bloods, which showed a raise in prolactin. I had previously been diagnosed with PCOS so it was thought it could be related to this. However just to be sure I was referred to the Endocrinology Team and they sent me for an MRI.

I still remember the day I went for my results. I had my mum with me, we were going for lunch and to do a bit of shopping after my appointment. The mood of the day changed in a second when we heard the word, tumour.

It was explained that it was on my pituitary gland (I have to admit I had no idea where this was, I clearly didn’t remember from school!) However, as usual with my luck, I couldn’t do it the easy way. I also had a cyst growing on my pituitary gland. At this point they referred me to Addenbrooks Hospital where I met Professor Pickard.

After discussing it all through, I was given two choices, have an operation to have it removed which came with a list of possible outcomes. Some not too great and also that I could still not be able to have a baby or, leaving it and monitoring it but still no baby as the gland swells in pregnancy, and the position could mean that any further growth could have implications.

We didn’t go to lunch, instead I went home, waited for my husband and read lots of leaflets. I also had a look at the Pituitary Foundation website as I was given their leaflet to help me make one of the biggest decisions I’d ever had presented to me. My husband was really supportive and said he would support me no matter what decision I made. No matter what I chose, not only was I dealing with the fact I had a tumour, I was also the reason that we would possibly not have children.

My employer at the time was great and gave me some time off to help me process what had happened. In the end I decided that I had dreamed of being a mum for so long that I wanted to take the risk of having it removed in the hope that somewhere along the line, I would be lucky enough to fall pregnant.

So, in September 2007, we made the journey to Addenbrooks. I had to be there for 7am so it was a really early start and I didn’t go down to surgery until early afternoon, it was a very long day. I don’t remember much about the first few hours after with the exception of I remember waking up crying, which was how I’d gone to sleep as they couldn’t get my line into my vein and then clearly, they did!

The nurse asked if I was in pain, I said yes and the next thing I remember was feeling like I was moving. It turned out I was as I returned to the ward to the sound of the Hollyoaks theme tune.

My husband and parents said I looked a bit of a sight with what could only be described as a large tampon under my nose. Apparently, I asked for a Burger King as there was one in the food court downstairs and then went back to sleep. When I did wake up enough to eat, let’s say the toast and morphine did not mix well! I was told the next morning that Professor Pickard had managed to remove the tumour with its cyst and leave all of my gland in place!

I don’t remember on what days things happened, but over the next 10 days of my hospital stay several things did.

I was woken to having a needle jabbed in my belly as apparently, I was dehydrating myself into the bag attached to my bed.  The rush of air to my head when all the padding was removed from my nose was insane.

I then started to have fluid coming out of my nose and found myself having a spinal drain fitted. This meant I could not change position in bed without needing someone to alter the drain. I couldn’t leave bed to go to the toilet or have a shower.

I remember crying as I just wanted to wash my hair, it felt matted and disgusting, so a lovely nurse said she would sort it for me. I presumed she meant a dry shampoo or something but the next thing I knew my head was being placed into a blow-up sink looking thing (having adjusted my drain!) A bag of warm water was attached to a drip stand and on the end was a shower head! It was the best hair wash I’d ever had and made me feel a little more human and happier in what was a really difficult time. She even dried it for me!

After about 5 days, the drain was removed. 10 days after being admitted I was finally allowed to go home. By this time all I really had to show for it was a lovely scar on my thigh, a bag full of meds and lots of teddies, cards and gifts. Family and friends had been really kind and thoughtful during my stay. I’d been brought new pjs, nice shower gels for when I was allowed out of bed and books.

Having recovered at home, more tests were completed and yet another MRI and I was told that I was a very lucky lady! Not only did I have my gland, but it was still fully functioning.  After a few more months I would be referred back to Gynaecology and hopefully start our journey towards having a baby but likely via IVF.

It turned out I needed neurosurgery. In the February I was still feeling a bit poorly. I was told to take a pregnancy test, which I was really upset about as after so many negative ones, I really didn’t want to have to watch another screen tell me no, not this month.

The window however told me that I was pregnant!  I made my husband go out and buy two of the most expensive tests he could find, not another bargain one. That too showed I was pregnant. My Endocrinologist at my local hospital was as surprised as us and planned for me to be monitored throughout my pregnancy.

In the October we met our little girl who was everything we had ever wanted and more. We felt so lucky and thankful. We sent her new-born photo with an announcement card to Professor Pickard.

I will never be able to thank Professor Pickard enough for what he did for me and helping us to have the family I had dreamed of. Four years later and we were joined by her brother and our family was complete. The man is my hero.

After lots of MRI’s, what felt like the hospital having more of my blood than I had and countless appointments, last year I was finally discharged as the tumour had not grown back and my functionality was still normal.

I just wanted to share my story as I remember when I was looking after being diagnosed there were not many out there. I know I am lucky and on a percentage rate one of the very few to be in my position now but it CAN happen. The word tumour is ridiculously scary, but never give up hope on getting your happy ending whatever that looks like. 

Thank you for taking the time to read this.

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