Alan Wood describes his experience of Interstitial Cystitis (sometimes called Painful Bladder Syndrome) and the treatments he has found to be beneficial. Mr Wood is a father-of-two who lives in London.
“It started about nine years ago when I started to need the toilet at night. I would be up three or four times each night, which seemed a lot, so I went to my GP. He thought it was an infection and gave me antibiotics but it didn’t go away and actually became worse.
It took about four years before I had a diagnosis. By that stage, I would have severe spasms of sudden pain. I would feel desperate to go to the toilet, but was unable to pass urine. My stress levels would be terrible which further aggravated the pain.
I wasn’t surprised when I was finally diagnosed with Interstitial Cystitis. My mother has the same condition, so it seems to run in the family. I was finding it very hard to manage a normal lifestyle and continue my job, which was for a recruitment firm. I would self-catheterise before work, to try and relieve pressure on my bladder before going into the office. But by 10am the pain was building up and I would go to the toilet in acute pain. My company was pretty sympathetic but in the end they sacked me because I was unable to do the job.
I tried different treatments, including bladder distension and a course of bladder installations. They both provided temporary relief but the effects wore off and the symptoms would return.
I was referred to Mr Ockrim from another London hospital because he is a specialist in the field and the treatments I had been given were not providing any long term relief. At that point, I was feeling desperate, almost suicidal. I was going to the toilet 60 times during a 24 hour period, getting little sleep at night and during the day, life revolved around getting to the toilet. For 90 per cent of the time, I was in severe pain.
Mr Ockrim prescribed two drugs to relax the bladder and thereby relieve the symptoms – Pegablin and Amitriptyline. They have made an enormous difference. The pain comes and goes but the severity is far less. I recently had two weeks without any pain or any need to self-catheterise, which would have been hard to imagine before. I feel that I am beginning to control my bladder, rather than my bladder being in control of me.
I am not at the end of my treatment. Mr Ockrim has suggested Botox injections as the next step and that is a treatment I would like to try. I still have to go to the toilet every 20 minutes which is far too often in the long term, but I have been so glad simply to get to a stage where the pain and spasms are reduced