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Alan Wood describes his experience of Interstitial Cystitis

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