With thanks to Pituitary Life July 2011

I was first diagnosed with cranial diabetes insipidus (CDI) in 1997; my symptoms began a year prior to my diagnosis. I have a pituitary tumour, which has caused the condition – one possible reason for the tumour could be a head trauma that I sustained around the age of seven years, but this has never been medically confirmed.

My symptoms began with, literally, an overnight change in my urinary patterns.

I remember suddenly needing to pass huge volumes of urine every hour and, along with that, the most incredible thirst which was never quenched. During this period, I was only able to sleep for an hour at a time, as my bladder refill rate was hourly. My appetite was affected and I felt so full of water that I ‘sloshed’ as I moved about! As a result, I was feeling tired and lethargic.

There was a particularly worrying point when my stools became dark green in colour. It was at that time I carefully researched my symptoms and felt sure that I had DI because of the sheer volume of dilute urine I was producing – the great challenge was trying to get across to my GP how ill I was. At the time it was very unpleasant, distressing and totally stopped my life.

As for my working and social lives, they both pretty much halted at this time. I had to be sure of being near a toilet all the time and carried litres of water to drink. If I went out, I would plan routes via public toilets.

Other aspects of my life were hugely affected too. Travelling long distances was precluded – getting stuck on a motorway was incredibly distressing, as it could mean wetting myself in my car. I remember how difficult it was to try to hold the excessive amounts of urine and get to the toilet on time to avoid the embarrassing situation of leaking. Sexual activity needed to happen around the time that my bladder was not refilling as it can be impossible to reach climax with a full bladder.

I do feel that I have been hugely affected as a person by the extreme nature of CDI symptoms. My mother would say I have changed dramatically. I am less tolerant and get very stressed and over-emotional now. I find I don’t cope as well with situations that are stressful, which wouldn’t have bothered me before. I am more insular, my memory has been badly affected and my confidence has been shaken too. I also have bad migraines.

I have now managed to find a medication that suits me, so I know exactly where I am with toilet needs. This allows me to have a much more normal life and freedom to do what I want, when I want. I am no longer restricted when I go out and I don’t need to consider whether I’ll need to sit for long periods of time.