Cystoscopy today, question about IC for those that have it

[MissyLouWho?]

I had a cystoscopy done today.  It showed that I have a narrow ureter or urethra or whatever the pee tube is called , and inflammation in my bladder that looked like patches of salt.  Everything else looked good.  He said the patches of inflammation could be due to lupus or Sjogren's.

My symptoms are urinary urgency and frequency (I go 3-5 times a night, every 15-30 minutes during the day) and never fully empty my bladder completely.  Weak stream, too.  So basically I pee all the time but little amounts of dribble when I go, even though I FEEL like I have a bladder full.  The urologist said I have to start Vesicare and if after 2 months it's not better, he has to stretch my urethra or ureter or what the tube is called and then do more invasive testing. 

My labs over the past 2 months (May, June, July) have been:
WBC Esterase~ 2+,       1+,        3+
WBC~                6-10,    6-10,     11-30
Non- Renal Epithelial cells present (>10) in last urinalysis only.
Protein present (1+) in first urinalysis only.
Culture done at 2nd lab said no growth.
He did say that while it may have been a UTI in the beginning, it isn't one now.

Does any of that sound like IC?  He didn't mention it but he really didn't say much except "try vesicare and see what happens  in 2 months", but  I know a lot of you have it and have the experience with it so I thought I'd ask.

[Katybarstool]

MIssy

I have no experience of IC, thankfully, but I had similar symptoms when I had a bladder prolapse. Have you been checked for that? The doctor who treated mine was a uro-gynaecologist.

Kathyx

[jazzlover]

I don't know. The real test for IC is a bladder distension under anesthesia. With IC there are usually RED patches and/or ulcers.

The pain would be non-stop just like bladder infection pain.

I never took Vesicare. That's a new one. Elmiron is often used for IC, and I'm sure there are newer drugs I'm not aware of. Hope you get the help you need.

[Sleepy In Seattle]

I don't know what to tell you about your tests, but I had the urethra-stretching stuff done twice about 20 years ago. IT IS NO FUN. If it comes to that, make sure they give you lots of numbing. It did help in being able to empty my bladder, though.

I'm sorry you're going through this - I know how miserable it can be....

[MissyLouWho?]

Thanks ladies!  I was really hoping to hear that someone who had it would say that it isn't that at all. 

Jazzlover~ no red patches or ulcers, so I am hoping it's not that.  Poor Elaine (Carolina) has a terrible time with IC and I was a little worried it could be that.  But without the ulcers and redness I have a good shot at it being something less painful!

Sleepy In Seattle~ I really hope the Vesicare works because I'm NOT looking forward to having that done!  They could barely numb me for the cystoscope, my urethra is so narrow.  She had to do it twice and she still couldn't use much numbing gel.  I actually have to pee like 4-5 times after I go to bed but before I fall asleep, then 4-5 times in the night.  Really annoying.  It's like having a breastfeeding newborn again, only no cute little face to look at every time I wake up

It doesn't hurt like UTI pain, but there has always been a hot pinch right before I actually pee, for as long as I can remember (which we all know isn't very long )

Just praying the Vesicare takes care of it all!

[eye2dry]

Hi Missylouwho.

I had cystoscopy in April. I also had a cystoscopy 10 years ago and my urologist talked to me while it was being done..

He said I had a ureathral (narrowing) stricture and he dialated the ureathra right then using a numbing gel. I never had a a problem with urine stream again after that.

I also had at the same time (with just the numbing gel) a "potassium test" where he instilled it into my bladder using a bag and catherter. Apparently my test was negative b/c I didn't yell & holler and jump off the table!

My oldest daughter has IC and takes Elmiron and Elavil for it. She tried Detrol but did not like it.

Take care and hope your fixed up soon with your meds.

eye2dry

[jazzlover]

You might ask your Dr for Vistaril to help you get thru the night with fewer trips to the bathroom. It helped me! Generic is hydroxyzine pamoate.

It's a simple drug .. few side effects aside from drowsiness and maybe some dryness.

[MissyLouWho?]

Thanks guys.  I'll wait 7 more weeks to see if the med works first, then call to ask him about the other stuff if it doesn't.  If the nighttime frequency gets worse, I will call him sooner.

Thanks for sharing all your knowledge!