IC awareness day 20:diagnosis

What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of us to relive, it's important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I'm sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they're not alone.

I was seriously ill last autumn from September to November with Cryptosporidium and Gastritis. I was in hospital for a month and had severe stomach and bowel problems and was dangerously underweight. Then, just when I was turning a corner in my recovery mid-November and being able to eat, the bladder symptoms began. One night, out of nowhere, bad pain when I urinated. There was nothing on the 'dipstick' at the doctors surgery so they sent me away but the symptoms continued. For a couple of weeks I did nothing but the symptoms got steadily worse. 

Sure I had a UTI, I insisted they send a sample to the lab and sure enough it found some 'Ecoli'. They started me on one antibiotic, which did nothing. Then another, and another. Then stronger ones - I remember Cephalexin, and Ciprofloxacin. All the tests by now were negative, negative, negative. I had a full sexual health screening. I became convinced it was some sexually transmitted bug they don't test for, but which can give UTI symptoms, so I pushed to be tested for these too. By January I was getting desperate. I needed an answer. The STD doctor was very unsympathetic and thought it was all in my head - due to upset over breaking up with my partner! I was referred to a kidney specialist who knew little about IC, and thought I had 'urethral syndrome', but referred me on.

The consultant urologist I ended up with has been thorough, scientific and detached. We tried as much antibiotic therapy as we could, ruled out other causes, and at that point he said ' I need to have a look at your bladder'. This was March, and by April he'd found mast cells++ and chronic inflammation in the lining and detrusor muscle and diagnosed me with IC - something which prior to the rigid cystoscopy he'd thought 'very unlikely' as there was no blood in my urine. But there it was. Once he saw with his own eyes and had the biopsy results, that was that. As yet, we have found no way to help me other than painkillers. Am waiting to see if I will be able to take Elmiron - we've applied for it (not licensed in UK) and awaiting the answer.

As yet the diagnosis has led to nothing positive and I still remain utterly confused as to the cause of my IC or the cure. In some way it was linked to my immune system being depleted and in some way to the bacteria that must have spread from my bowel - perhaps my bladder got inflamed and then has just stayed that way, unable to heal itself for some reason. That is my story. Don't feel you are alone in this nightmare. And worry if diagnosis is taking a while; it's not the end when they diagnose you, it's the beginning.