One of the things that suck the most about living with an autoimmune disease is the unexplainable symptoms that put your body under siege. Like, for example, feeling like you have a UTI—when you don’t.
It starts out of nowhere. You feel a burning sensation in your bladder. It also feels like you really need to pee. When you go, though, you only urinate a teeny tiny bit. The burning only eases a little.
It happens again and again, so you figure you must have a UTI. You make an appointment with your doctor. They run a urine culture… and it comes back negative. No infection. There’s nothing wrong with you.
But it keeps happening.
And every time, there’s no infection.
None of my doctors have ever been able to explain this to me. I’ve just learned to live with it. I had a tiny flare a few weeks ago, and a few weeks before that. Last night, though, I had a major flare.
For hours, I was miserable. I desperately looked it up, trying to find some kind of remedy. (When you have a UTI, you can get antibiotics from your doctor. So what do you do when you feel like you have a UTI but you don’t?) I found information about interstitial cystitis and Lupus cystitis, both of which have symptoms like what I experience.
“Cystitis” means inflammation in the bladder. Usually it’s caused by bacteria, in which case it’s a UTI.
Because I have UCTD that could be pre-Lupus, I try to note any changes in my “normal.” A few years ago, when I had another bad flare of this weird non-UTI, my doctor at the time found blood and protein in my urine. No one was ever able to explain why to me.
I suspect it’s yet another piece of the puzzle—a puzzle that’s slowly taken shape over the last decade.
I see my new rheumatologist next Thursday. Who knows? Maybe her fresh eyes will help make sense of all this.
In the meantime, I read on Mayo Clinic that taking NSAIDs and an antihistamine could help ease cystitis. It worked like a charm; I still feel dull burning, but it’s way more comfortable than it was.
Autoimmune diseases are so fun. 🙄