Bladder gone wild?

[Fluffysmom]

Hello, all,

I'm taking a quick minute to ask about weird new symptoms.  I have interstitial cystitis, so I usually have to urinate often.  Lately, it has become more frequent, and I've been getting sharp pains in my bladder. I also get weird vibrating sensations in my bladder area, sometimes when I don't realize I have to go, and sometimes when I'm going and the urine is just trickling out.

I had a virus while in Palm Springs; any possibility that this left me open to another lesion that is causing my new symptoms?  I went to my PCP yesterday, had a urinalysis, which came back clear, but they're still waiting on the culture.  Am I leaping at MS fireflies, or is this a possibility.   Would it then be a good idea to have an enhanced brain MRI to see if I have and active lesion?

I may have had too much caffeine to try and ward of the spinal headache :o)!

I'll wait until tomorrow to share how fun my LP was (not!).

Kathy

[Fluffysmom]

Thanks for your input.  It always helps to know I'm not alone in the weird things that happen to my body.

I had a urologist do all sorts of tests, and he said that scarring from IC gives me about half the bladder capacity of "normal" people.  He did a few dilatations ( filling my bladder with a lot of water under anesthesia to stretch it out), but I quit after the last one caused me to bleed.  He said I wasn't bad enough to do DMSO in the bladder.  I tried Detrol (bad reaction) Elmiron (didn't work), and then just decided to take care of things by myself I've adjusted my diet; artificial sweetner was my worst trigger.

I always wear panty liners in case of a little leakage; my urologist tested me and said I didn't have leakage; he doesn't wear my panties! .

I haven't experienced anything quite like this before.  

I'm quite happy to say that I haven't much of a headache from this mornings LP; mostly just nerve pain down my leg where he "pinched" my nerve while trying three times for a puncture.  I'd better go back and lie down.

See ya'!

Kathy

[CtResident]

I have had bladder pains and problems over the years. I thought it was my endometriosis. I have had abdominal adhesions, ovarian cysts, and also a hysterectomy.

When I was told I had interstitial cystitis, I was stunned. I had to have surgery for more endo and adhesions and cysts a year ago last October. I had two surgeons, one for the gyn issues, the other for the uro-gyn issue of IC. That dr. told me I had to come back to the hospital (one hour trip each way) for a 5-minute instillation treatment. One time per week for 8 weeks in a row. And, $400. for a 5-minute treatment??!!

ARGH.

I did the first two weeks treatment, then asked to please go to a urologist in my own county. Lo and behold, he asked if the other uro- did X,Y, and Z?

No. No. and NO. He told me that IC is a diagnosis of "last resort". Since the uro-gyn didn't do these things, he had to go through them first.

First was to keep an intake and voiding diary. I was stunned to see that I was/am highly sensitive to GREEN tea! What others take as a health benefit, drives my bladder insane. Store brand tea, no problem. Green tea, agony.

I am angry that the dr. that diagnosed me (at a teaching hospital!) got it so very wrong. I have NOT HAD ANY symptoms since then. I CANCELED weeks 3-8 of the IC treatments. I did not even need any follow up with the new urologist!

I must admit, I do NOT have a diagnosis of MS, is this all a coincidence? Could this be a relapsing-remitting symptoms of MS? I don't know. Only time will unfold it before me.

I have had pains for years that I described as "shards of glass" in my abdomen. I have been reduced to crying, holding my abdomen. I have had the spasms, the waking several times at night, the taking of Detrol LA (which I stopped taking after only 3 months because it "didn't work".) I can understand your pain and I am so sorry.

I do have problems with leakage still, can't jump rope with my kids, can't sneeze without wondering "uh-ohhhhh".......

I just haven't had the shards of glass pain in over a year. So I'll take that for what it is.

I might suggest that you see if the intake/voiding diary can assist you?

And if you have done all of this, and you truly do have IC, I am so sorry. I only wish you relief.

Suzanne

[Deb61]

I've had weird sensations their too, but it felt like the butterfly feelings that I'd get when I was in the early stages of pregnancy, when the baby was moving.  I've never had pain in the bladder unless I'm having one of the many bladder infections that I've had (it sounds like you're having bladder spasms).  However, I do have problems with the urine trickling out.  This will happen for no reason sometimes--not even a cough or a sneeze.  

I don't know if an MRI of the brain would show the problem.  The lesion may be in the spinal cord . . . Hopefully someone can chime in here, because I don't know for sure.  

LP's aren't fun.  It's important to continue to lay flat if you're still having headaches.  I hate to say this (I probably was an exception), but my headache from the LP lasted for weeks.  The headache was relieved by laying my head flat, but the second I was up, the headache was back.  Continue with the caffeine, to help seal up the area!  I would definetly not suffer as long as I did with a headache and get a blood patch if you can't get rid of it.

Deb