I was fatigued, in constant pain and couldn’t understand why I wasn’t having a period even though I had come off my pill 5 months earlier. That was over 7 years ago and it feels like it happened to another person now.
My doctor told me he would refer me to the hospital and they would “switch me back on”, not quite what a girl wants to hear when she is desperate for another baby.
My daughter was almost three when I finally heard the words “Mrs Beddow you have a pituitary tumour”. I didn’t even know where my pituitary gland was and I didn’t hear a word of the rest of the speech the consultant gave me, I just walked home in a daze.
I had acromegaly. It is an incredibly rare disease which affects around six in every million people. A tumour on your pituitary gland causes you to produce too much growth hormone. That would explain the 6 ring sizes, 4 shoe sizes and 3 dress sizes I had gone up since my daughter was born then. They recommended I went back through photos to see if my face had changed. Of course it had, but I had had a baby, turned thirty, I just assumed I had let myself go and put some weight on.
Looking back, the changes were a bit more dramatic than that. The photos below are me aged 19, 31, 34yrs. This is where the phrase “Kate the Princess Fiona Years” was born. As my husband decided it was like the scene in Shrek where Fiona changes when the sun goes down. Fortunately for me, the sun did come back up. It doesn’t for everyone.
In November 2007 I had a transsphenoidal hypophysectomy (surgery up my nose to remove the tumour, but I memorised the long word so I could sound clever!), and within hours my body started to return to normal. Having been told by several medical professionals that the growth I had experienced was bone growth and was irreversible I wasn’t expecting quite such a dramatic result. I was also told that I wouldn’t be able to have any more children. Less than six months after my surgery I fell pregnant with my son (now 5years old) and I even managed to breast feed him successfully until he was 13months old.
The difficulty with this condition is that it is incredibly rare. In addition to that, it is most common in men over the age of 50, so as a 30 year old woman I wasn’t even on the radar. The symptoms are unexplained growth (particularly in the hands, feet, jaw, cheek bones and brow), headaches, painful joints and crippling tiredness. It felt like a very painful return to teenage years, I wanted to eat junk food and sleep all day.
I don’t know what the long term effects will be for me. It is often characterised by weak bones, weak joints and a weak heart (as your organs grow too), however, I hope I caught it early enough not to be too badly affected. This is a life threatening illness though and the more people that know the symptoms the better. Many people continue to live with this condition. It is manageable with injections and surgery can reduce the symptoms dramatically but the pain is very very real.
I am under no illusion. I am incredibly lucky to be living the life I am. I have very few symptoms. My features are back to normal. My feet are not back to their previous size, but are at least back into women’s shoes. My joints are weaker than they were and my energy levels are still not as they should be for a woman my age. But, I get up every morning with a smile and a spring in my step, grateful for the life I have.
Life could have been so different from me. If I can help one other person spot this disease early enough to have a similarly successful result, I will really feel I have achieved something.