Urinary tract lesions--Sjogren's and Lupus here
I have had, since 1989, serious urinary tract lesions, including one extremely bloody, messy, painful one right at the introitus. My urethra is so spasmed the uro-dynamics test (an audio one which uses sonar to "see" the shape of the bladder) revealed a urethra so narrowed that the sound the wand made in my urethra was practically beyond the reach of human hearing, audible only to dogs. The technicians and doctor were stunned.
I have found, on Med-line, two women in Europe with lesions in their urinary tract, but that's it so far. My bladder is also terribly inflamed, and pain has ruined my life. Lupus is bad, Sjogren's is worse (more aggressive), but these bloody (literally) lesions are making me crazy. I need morphine just to be able to stand the pain--it's so severe it fractures my mind and I just disappear into madness until the pain stops, which even Morphine doesn't always manage.
Is there anyone else out there with anything like this? I had lesions on my face, back before I was diagnosed and didn't know that I should be staying out of the sun. They'd be flat, red, round, then would split spontaneously, and remain open for weeks and weeks while I treated them with Aloe Vera or cortisone cream until enough scar tissue had built up to stop the splitting. They left small round 3-d scars on my face, where the scar tissue built up. They are now flesh-colored, thank goodness, but of course we can't reach the internal lesion to treat it with anything, though I've tried. And anyway, urine washes away any healing substance, so we're at a loss.
Sex is too painful to even contemplate, I can't urinate, I need morphine 24 hrs/day (fortunately I am not addicted, but after 5 years of it, I'm surprised my body doesn't require it just to survive--it does, however, make a social life, a normal life, impossible) Even when I go out to a movie I have to carry my medicine and syringes--potenitally humiliating though legal.
But I don't know what to do. To try to get Aloe or other skin-healing substance on the lesions is a practical impossibility, yet that's the only way to stop this problem. And it took weeks on my face for the lesions to build up enough scar tissue to stop splitting, even without the constant urine baths.
Does anyone have a similar problem? Or an idea, however outlandish? I'll try anything (and yes, I have been to every sort of "alternative" healer you could name--I am one myself).
I saw, in the doc "Stories of Lupus" a woman with lesions all over her face, chest, arms, but other than those two Sjogren's patients in Europe, haven't found another person with a similar problem.
Make life into art.