Interstitial Cystitis

Since 2010 I have had a bladder tumour removed followed by BCG treatment a radical prostatectomy. For the last 3 years I have had all the exact symptoms of Interstitial Cystitis as described by many sufferers. However I have always been told it was not Interstitial Cystitis but a bladder infection despite urine samples coming back negative I was on antibiotics for more than a year making non difference at all but being told there must be an underlying infection just not showing up on urine tests.

In July 2016 I was admitted to hospital with a severe neck pain trauma. I was started on a treatment of a combination of Pregabalin and Nefopam. Within 3 days not only was my neck pain cured but the bladder/ureter pain that I had been suffering from for so long completely vanished. Now after 8 months I am still pain free and have complete control of my bladder and all urgency has also gone. I have tried giving up the Nefopam but after a few days or a week at the most, the old painful symptoms come back. So I start taking Nefopam again and it is gone again.

The only drawback is of course a dry mouth problem but hey that is not a real problem.

I have mentioned this to several medics and the reaction I get is that I must have had some nerve damage from surgery or scar tissue in other words trying to find a medical problem that this combination of drugs has cured by diverting the path of pain perhaps.

Whatever it is the symptoms of what is described by so may patients as Interstitial Cystitis

has been very well controlled.

I offer this up for consideration by all who are trying to understand the ureter pain of their patients which may not be Interstitial Cystitis even although all the symptoms are there

I am an 82 year old male.

1 Reply

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  • Hi Palmac

    Your post was very useful not only to myself but potentially to others who suffer with IC/PBS. I hadn't heard of Nefopam before but it definitely gives some of an additional avenue for treatment. I'm so pleased that you've had a positive outcome! I hope you continue to respond well to the medication and that you will keep us up to date as people's experience/suggestions are invaluable

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