I’ve been thinking about writing a post like this for a while now, but if I’m completely honest it scares me. But I have decided to do it in the hope it will help people in the same position as me, and may possibly help me by writing it all down. I am going to give you a bit more of an insight into the life of ‘Laurly Lou’. Here goes…
Around the age of 12 I was diagnosed with a macro prolactinoma, which is a pituitary tumour (benign brain tumour). Now using the term brain tumour some people can get weird about with this condition, when I was told by the doctor he used ‘brain tumour’ as my diagnosis; therefore thats what it has always been to me. But I have seen posts where people have argued it technically isn’t a brain tumour, even though it is a tumour on the pituitary which is connected to the brain. I am by no means a professional, and do not know everything about my condition but I do know that to me it is a brain tumour and to a lot of other people with the same condition it is too. It was quite recently I saw a post with someone saying to not refer to them as brain tumours, now this may not seem like a big deal to some but to me it made me feel worthless and sad at the fact someone who doesn’t suffer with the condition felt they could even say this. I will stop there as I don’t want to make this post all about that, but I felt I wanted to include it because it is something I see discussed on pituitary forums a lot.
As you can imagine being diagnosed at that age was scary, especially hearing those words. But I had my family and friends there the whole way supporting me and getting me through the difficult time. At the beginning there were quite a few complications, with the most difficult one being getting the diagnosis. It meant lots of GP visits trying to persuade the GP on call to refer me on to a specialist, because I had been having serious head paid down one side of my face regularly. Now its unusual for a girl of 12 years old to have this type of tumour, so I understand the GP thinking the headaches were symptoms for something else, but I will be forever grateful to my mum for realising something wasn’t right and persisting over and over again. After a few trials of medication for what they originally thought it was, I finally got the diagnosis after they saw the MRI scans. It was diagnosed as a macro one which is a larger tumour over 10mm, I’ve never been told the actual size of it, they used to compare it to the size of types of fruit but I have completely forgotten what. At my most recent appointment the consultant told me at diagnosis it filled the whole cavity and more so was quite large for pituitary tumours. I really hope this isn’t coming across in a ‘feel sorry for me’ way, as this is not the intention at all. I just want my blog to be somewhere I can share stuff like this in the hope I can give some comfort to others suffering with a prolactinoma, and to spread awareness about the condition.
It has involved lots of hospital appointments, overnight stays, MRI and CT scans, blood tests, hormone level tests, radiotherapy, surgery, amongst other things so is basically monitored regularly to make sure everything is stable. With my tumour it completely damaged the pituitary, therefore meaning it is non functioning. The pituitary is responsible for a lot of things, and is a very important link between the nervous and endocrine systems. I have seen it called the master gland before because it controls all the hormones in the body including thyroid, adrenal, and ovaries. Because my pituitary is non functioning I take the hormones my body needs via tablet form and until recently injection. With the surgery they were able to remove some of it but not all of it because of where it is positioned, I was told it had intertwined around the two main arteries in the brain so the surgeon did not feel it was safe to remove the rest. With these types of tumours it is a risk that they can push up against the optic nerve and cause eye problems. With mine it had started to do this so that is one of the reasons why they did the surgery, and then gave me a course of daily radiotherapy to help speed up the removal process. It is still there and I have been told it probably will be forever, but as long as it behaves I am happy.
The hardest thing I find about it all is the things that come with a pituitary tumour, because it controls hormones that as you can imagine significantly effects the body. Exhaustion is one of the worst things for me, I nearly constantly feel tired and have to put a lot of effort into doing something. I take thyroxine for an under-active thyroid so that is checked regularly as that can cause exhaustion. It’s something I find very difficult to explain to others, especially recently as I am finding tiredness to be a bit of a problem lately. I don’t want to be seen as lazy, so try to get on with it but over the last few weeks I’ve found myself having naps throughout the day again like I used to. One of the massive things that I feel has come from having this condition is depression and anxiety, this has been one of the hardest things I’ve had to go through. To me this part of it has been the worst part of the ‘journey’, because it is so hard to explain to others how this condition and everything that comes along with it makes me feel. I have tried many different medications and therapies for depression, but I have just come to realise that this is something that will stay with me forever and that I just need to try and plod on and not let it defeat me. Luckily I am not alone and I have a great support system, and I know I can always turn to them if I need to. I still find myself feeling low a lot and do struggle on some days, but I have learnt to manage it myself without the medication and counselling, as I feel this is better for me currently.
Sorry I realise I have gone on quite a bit, so I will leave out a few things otherwise it may turn in to more of a book than a blog post! I just wanted to try and explain a bit more about what a prolactinoma is and what my journey with this condition has involved. I hope I have not upset anyone by this post, and I am sorry if I have used some wrong terms or words but I have tried to explain it as best as I can and I hope it is received positively. Thank you so much for reading, I actually feel a bit better for writing some of it down. Im a bit nervous of what reaction I’m going to get, if any, but I hope I am able to help someone somewhere by giving them a bit of an insight into the life of someone with a pituitary tumour.