Due to feeling so depressed with this debilitating illness and feeling like I had no quality of life left I was referred to another specialist. The consultant performed another cystoscopy, bladder distention and expansion of the urethra to confirm again the diagnosis of IC but also found Hunner’s Ulcers within my bladder wall. I was told my bladder was in such a state that I should consider having it removed. Naturally I was devastated and felt that there must be something else that could be done before electing for such invasive surgery.
My whole life revolves around my bladder and bowel symptoms. I have to toilet map wherever I go and do not drive to places that are unfamiliar to me due to the constant worry of not being able to reach a toilet. I have a car with blacked out windows to allow me to use my own adaptions inside it if I have nowhere else to go. I avoid using public transport and aeroplanes for the same reasons. I am panicked by the thought of not having access to the appropriate facilities.
Specialists advised me not to use a catheter as this causes infections and therefore I have tried and tested many products on the market to assist with voiding but none are suitable for my needs.
If I could just produce a product that would allow myself and others suffering the same problems to void discreetly and take away the fear of not having toilet facilities close by, then I am sure this would alleviate some of the anxiety and pain that is suffered with this horrendous incurable disease.