Karen’s Story

Karen’s story is a sobering account of her on-going battle to find a successful treatment for her debilitating chronic Painful Bladder Syndrome and Hunner’s Ulcers.

I was told my bladder was in such a state that I should consider having it removed. Naturally I was devastated.

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.

Specialists advised me not to use a catheter so I have tried many other products to assist with voiding but none are suitable for my needs.

Iam a 44 year old police officer who up until 6 years ago, would have considered myself to be mostly fit and healthy.

During 2010 I started to suffer continuously with gastroenteritis and urinary tract infection symptoms. I noticed that if anything was going around I would surely pick it up! I constantly felt fatigued and in pain within my lower stomach area and suffered agonising back pain. At times I would pass out for short periods and come round feeling like I had been hit by a sledge hammer all over my body.  I would frequently visit my GP and A & E departments, only to be told either that I had a Urinary Tract Infection (UTI) or they couldn’t find anything wrong with me. I have since established the lab tests for the UTIs were mostly negative.

My energy and concentration levels became so low, that I struggled to perform in my job. I became severely depressed and suffered with anxiety as a consequence of all these symptoms and the fact that I felt like the specialists and some of my colleagues thought I was a hypochondriac.  I was placed on Mirtazapine for depression and anxiety as for some reason I couldn’t tolerate any other anti-depressants. The drug gave me symptoms of cloudiness in the head and severe panic attacks and subsequently about 12 months later I stopped taking it.

This is when the infections got worse and the frequency in urination became apparent. I had already suffered a number of intolerances to antibiotics and other drugs, so when I suffered with gastroenteritis and the norovirus I experienced severe pain around my bladder area.

I had also started to experience severe anxiety symptoms when eating certain foods and drinking alcohol. The frequency and urgency with urination got progressively worse and so did the intolerances.  I could use the toilet more than 30 times during the day and night which caused me to suffer with the most horrendous sleep deprivation and pain in the urethra. Doctors just stated I had UTIs and prescribed more antibiotics.

Eventually, almost 3 years later, I was referred to an urologist. I had already conducted my own research regarding my symptoms because I knew there had to be an explanation for how I was feeling. A bladder distention and cystoscopy were performed, which confirmed my suspicions of a disease called Painful Bladder Syndrome (PBS) or another term for the diagnosis is Interstitial Cystitis (IC).  My bladder capacity was extremely poor due to the bladder disease therefore causing me to void more frequently.

I was given weekly instillations of Cystistat into my bladder for 12 weeks and then continued with this treatment every 2 -3 weeks. Due to no changes in frequency I was then given a similar treatment called Hyacist in a higher dose.  Unfortunately this treatment has not improved the urgency and frequency that I suffer and due to my intolerances of other drugs I am limited in what treatment I can have.  I also suffered with intolerances to most foods and beverages which caused my stomach to swell constantly and left me with symptoms of Irritable Bowel Syndrome.

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.

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