I feel like I have been wandering the abandoned streets of the Internet looking for information and support, feeling quite lost, and suddenly here you are, real people. I'd say you have no idea how grateful I am, but unfortunately, you probably know exactly what I'm feeling right now.
Background--I'm Michelle, 45, history of UTIs that would go from "hmmm, that kinda hurts" to frank blood in a matter of hours, not often--once every couple of years or so. I also have a recent history of kidney stones. I had a hysterectomy in 2010, and at that time the doctor had felt an egg-shaped mass before surgery, but found no evidence of it during surgery. I've had more CT scans than I care to count, and I work in the medical field.
I was started on Topomax in August for migraines and because that med is known for causing UTI symptoms and kidney stones, I started drinking nothing but water, save my one cup of coffee per day. The first week of November I started getting what I thought was a UTI, but it never really progressed the way they usually do. So I increased my water, and tried some natural remedies.
A couple of weeks later the symptoms all remained, so I dipped my urine at work and noted trace blood, but no bacteria. Another couple of weeks go by, same symptoms of burning, urgency, frequency, and lower abdominal pain remain so I finally give in and ask one of the PAs I work with for a script for antibiotics. And nothing happens. I made an appt with the nurse practitioner at my gyn office the Monday after Christmas, my UA is spotless, my symptoms are unwavering. I tell her that as crazy as it sounds, and as rare as it is, I'm betting I have something like a urethral diverticulum. She just looks at me and finally says...
"Or something really crazy....like bladder cancer. You need to see a urologist."
Usually I'm the one who is worried about really bad things (I've had Legionaries and HELLP syndrome, I have a reason to worry about bad things. Lol), but her using the C word caught me off guard. I "pffft"'d it away and we bounced around other possibilities like cystocele or IC. I'd have even been happy with a raging STD by this point, but that tested negative, too. In the end she made a referral to a urogyn an hour away to rule out cancer and figure out what's going on.
But since she said it... omg my brain. I've read everything I can find, trying to differentiate between bladder cancer and any other possible thing this might be. I get zero relief from voiding, the pelvic pain is constant, low, seated primarily to the left and center, and is enough to start making me lose my appetite. I do test my urine every once in awhile to check for blood, and every few days it tests positive for trace blood. Yes, I know I'm probably neurotic at this point. I'm taking Uristat daily and Ibuprofen when I really can't stand the pelvic and abdominal pain anymore. No one knows I'm going through this, I have to appear to be fine.
I still hadn't heard from my office regarding my appointment in Columbus as of today, so I called the urogyn myself and talked to the nurse. She didn't seem terribly concerned until I explained why I was being referred, what my symptoms were, and that they'd been constant for almost nine weeks. They called me back 30 minutes later to tell me they were reviewing my info to get me into the NP asap, who could then schedule my cysto with the Doctor. Holy hell that seems like a lot?
So that's my incredibly long story. Thank you if you got all the way through it. I have no one to talk to because I just can't bring myself to tell anyone. It's like if I don't say, it won't happen, know what I mean? I'm just grateful that I can share this here with people who will understand.
I'm going to go back to scouring the forums and reading everything I can find. I keep hoping that tomorrow I'll wake up and I'll magically feel good again and I can go back to convincing myself that I just need more water and cranberry extract.