Help...Doctors at a loss

[me123]

First indication of problem occurs with a noticeable fatige in upper legs. Within an hour or so very painful urinary pain occurs (presumably inflamation of the urinary system). Pain, throbbing occassionally of the bladder, frequent urination with little urine produced, when urinating muscles continue to try to expel urine - very painful (like when you get sick and dry heave). Essentially the pain and symptoms are like a UTI. No infection is noted in these instances. The episodes last 9-12 days and occurr up to 8 times a year. This has went on for about 10 years. Pain originally was mild and episodes were less frequent and only lasted a few days.

Various tests have been done. No diagnosis.
Almost vitamin B deficient. (levels very low for many years now)
Vitamin D deficient (unknown how long)
Liver does not like any meds that process through the liver. (no ibprofen or pyridien)
Confusion and dizziness are not uncommon with or without the flare-up.
IC was declined as a diagnosis because I could hold fluid without pain during a urinary test. I am still not certain about this part.

The questions are:
What should I do now, my doctors do not know what to do with me?
What could this be and how should I proceed?
Any other suggestions?

Currently on Vesicare and Gabapetin along with the appropriate vitamin supplements. I can no longer take items that process through the liver, past episodes were treated with ibprofen and pyridien and now the doctor thinks my liver starts inflaming right away. I am uncertain if the liver issue occurs before or after the intake of the otc meds. I will not know until the next episode.

Any help out there?

[me123]

I am not sure about the K sensitivity test. I know a lot of tests have been done though. I have had the cystoscopy with hydrodistension, flow tests, CT scans, and tons of blood work. (I have also tried some antidepressants, too many other complications to see if they work - I am allergic or my body won't process them.)

I started seeking help about 5 years ago with a Urologist. He did the cystoscopy with hydrodistension and said nothing was wrong. I also had a ultrasound. I gave up, changed insurance, and found a new doctor later on. The new urologist has run all the tests in the first paragraph. At this time the Urologist does not want to see me again as there is nothing surgical to be done and no indication that there is a serious problem.

I was sent back to my primary care doctor who again told me there was nothing she could do and I should be seeing the Urologist. The Urologist then suggested I see a pain management specialist. I talked with my primary and she referred me over to the pain management doctor. He thinks I could have over firing nerves, so I was put on a nerve suppressant. I was also referred to a pelvic floor physical therapist and an acupuncture person. My appointment with the therapist is next week.

Thanks for the reply.

[ICNDonna]

It does sound like your doctor is looking for ways to help you.

It's entirely possible to have IC that doesn't show when the bladder is distended. I hope you get some answers soon---not knowing was my worst time with IC.


Donna