My presenting symptom of Behcet's, the one that led to my diagnosis, was painful urination and heavily blood stained urine. I had all the usual tests with tubes and cameras, as well as investigations under GA. The urologist's report was along the lines of - nothing abnormal to see, although there is evidence of previous ulceration on the bladder wall. At that time I had never heard of Behcet's - wish that I had!
My urinary problems continued. The pain was excruciating and blood was scary but nobody knew what was causing it. I didn't have cancer and so it was put down as being 'just one of those things.' I wasn't happy with that but I didn't know what to do about it.
At another of my frequent visits to the GP I said, in a passing sort of conversational manner, 'I don't know if it's relevant but whenever my waterworks are bad the joints in my hands swell up and are really painful. I think I had in mind some sort of autoimmune disease, which was why I thought I should mention it.
My GP looked like he had a light bulb moment and asked me if I suffered from mouth ulcers. Oh yes, I said, I've always got ulcers - look, I have a mouthful now. I showed him what I now know were apthous ulcers inside my cheeks and along my gum line. And I had swollen joints and blood stained urine with urethral pain. Oh, yeah, and acne like spots on my face .
The GP remembered a fairly recent study day - although he couldn't remember the name of the condition - where ulcers and joint pain seemed to be diagnostic. He wondered if the waterworks pain, which by then I had identified as coming from the urethra, was due to ulceration.
The rest, as they say...
My most feared symptom was the urinary pain. It is excruciating and like peeing razor blades and doesn't respond very well to analgesics - Tramadol will just take the edge off it.
Eventually it was discovered that the constant ulceration had caused so much scar tissue that my urethra was tight and inflexible. I had surgery to dilate it and, for a while, it was much better. But then, because of course the ulcers continued to develop, it all came back again with a build up of even more scar tissue. Eventually I was admitted to hospital in severe urinary retention and was discharged with an indwelling catheter, which I wore for six months or so. It was undignified and I hated it. But I had no urinary pain.
Nowadays I self catheterise about four or five times a day. The catheters are tiny and discreet and as I have become more expert at passing a catheter (it's very different catheterising yourself to passing a catheter in somebody else!) it's just another fact of life - so much so, in fact, that I hadn't thought to mention it up until now! I have to take daily antibiotics to protect me from infection and they, of course, cause thrush BUT, apart from the odd painful spell, usually when I have been neglecting the catheters because I can't be bothered, I have now been free from urethral pain for almost a year. My most feared symptom has been kicked into touch. And boy it makes me feel good!