Not IC!

[noble1]

I went to see a urologist yesterday and he slowly inserted 650 ccs of saline into my bladder and looked at it through a scope (cystoscopy) and found that I do not have IC. He said my bladder looks very healthy and he could not find even a single cyst! He presumes that my assumption is correct and that the endometriosis and/or adhesions may be what's causing me pain. He suggested I go see an endo specialist to get a second opinion about the endo and my chronic pelvic pain and so that is my next course.

One thing to note is that people with IC cannot under normal circumstances stand to have 200-250ccs of saline inserted into their bladders without them being in excruciating pain and therefore I do not fit the bill. Again, he inserted 650ccs w/out anesthesia and I was only uncomfortable because of the fullness of my bladder and not really in pain.

I am still taking an anti-spasm med for the spams and frequency/urgency issue and I need to return in a month for a follow-up. But he said that because I had two major abdominal surgeries last year (back to back) that my bladder may take a while to heal.

Good luck to the rest of you and I hope you find a cure for IC soon!

[JenAZ07]

Be careful....as not all of us fit the typical mold of a IC patient. My first KCL (potassium test) was negative, my in-office cysto was negative, my hydrodistension and biopsy revealed, I had normal bladder capacity, but months later my tests started coming up positive for IC. See the other specialists, but if you are having frequency/urgency, don't completely disregard the possibility of IC.

I truly hope you don't have this horrible disease, but we will all be here for you either way. Good luck!!

[noble1]

I do have frequency with moderate urgency with spasms so I am taking something for that. I will go back for a follow-up in one month so he can see how I am doing. I am also going to see how certain foods affect my bladder as well. Something is going on in there to be causing me such horrible pain...but honestly I feel its the endo. Yes, I too do not want IC and feel really horrible for the ones that do have it. My heart goes out to you!!!

[ICNDonna]

When I had an office cysto as a part of diagnosis, my bladder looked healthy and normal and capacity was a little low, but not significantly. It was not until it was stretched under anesthesia that the IC became apparent. That was before the potassium sensitivity test was available.

Donna

[VickiB]

I imagine there are several other things that mimic the symptoms of IC, and hopefully you have something that will go away or can be fixed.

I just wanted to say that I, too, had a cystoscopy exam which showed a perfectly healthy bladder. My Uro said up-front that it would not show IC, but he had to have a look to rule out other possible causes.

Hoping the best for you,
Vicki

[SharonA]

noble1...I really hope that your symptoms are not being caused by IC. That would be incredible news. (((Hugs)))

[Mothergoose]

I have checked with the IC association twice about bladder capasity, volume is not a reason to exclude IC, IC comes in all volumes.

[jen74]

I agree with MotherGoose. Everyone with IC is different. I know when My symptoms first started almost 2 years ago I was not that bad, meaning I could hold alot of urine. Now I can only hold up to 7-9 ounces before I really got to go. I hope your doc is right and you do not have IC, but do not disregard the idea completely just because one uro told you you do not have it. The first uro I seen also told me I did not have it, he even said there was no such disease as IC.
In any event, I do hope you can get what ever is wrong cleared up and start feeling better.
Jen

[Mothergoose]

I was just rereading my post, I feel I should clarifie, I didn't mean you definatly have IC, but just that it may still be IC. IC seems to not be very well understood, so many docs have different ideas about it. If I had a dollar everytime a doc said I have IC or I don't have IC, I would be a rich person.

My theroy is I have IC, but I also have severe retention, so I have the IC symptoms, but because my bladder holds urine and I can't get it to empty, over time I have streached my bladder way out, hence why I can hold a large volume of urine, but I have frequency and ussally at most go 200 mls per hour, some days more some days less.

Overall I feel there needs to be alot more research into IC, and people vary so much that symptoms that don't fall nicely into a docs preception of the perameters. People should be investigated fully to make sure if anything else could be causing symptoms, but IC should not be ruled out on one thing that dosen't fit into the puzzle.

Just my opinion.

[TerriT]

I too hope you do not have this condition.

My symptoms started when I was 34 or 35. One day I was out driving around and all at once I had to go and I had to go now. I was about 20 miles out of town and it was all I could do to wait until we got somewhere I could go. Until that day I could go hours with no problem. After that day I started having more episodes to the point my doctor referred me to a urologist. He did a bladder fill test and told me I just had a small bladder. By this time I had to go every 2 hours. I was working as a 911 dispatcher and usually had someone who could take my console over for me to run to the restroom. I had no other symptoms until I was about 46, when I had what was suspected to be a bladder infection.

I was also during all of this time having gallbladder problems that started when I was 27, the day my father died. I would have an attack once or twice a year. I didn't think anything about it and had no insurance. When I was 34 or so I had a severe attack at work and my doctor who was just down the street saw me. He told me he thought it was my gallbladder and gave me some Vicodin. They ran all of the tests, the sonogram and a nuke dye test...which should have been a clue as it didn't go through right away, so the guy had me leave and come back in 2 hours. It had gone through and they finished the test. They said that wasn't the problem. My doctor gave me Vicodin to take when I had an attack. I was just happy that I could take something to get the pain to go away and not have to suffer for 3 or 4 hours until it went away. I moved to Portland and I went through another sonogram and was again told it wasn't my gallbladder. These attacks became more frequently. My current doctor figured since I had been tested twice it might be a muscle cramp. He continued to give me Vicodin which I always hoarded for fear I might have an attack and not have any.

While being treated for my bladder infection, my attack pains became constant and would not go away, so I went back for testing and guess what, they started the dye test and I waited for it to go through all the time they were watching from a screen in the other room and the dye wouldn't go though at all. They told me that my gallbladder was dead. I had to wait a couple of months to have it removed so I was on a steady diet of Vicodin. I figured my bladder problem was gone since I wasn't having any pain, just the usual frequency. Once I had my gallbladder out and had recovered, I went off of the Vicodin and there was the bladder pain that had been there but the pain meds were handling it.

I was lucky the my doctor thought of IC right away and sent me to a uro. He just did the office scope and said there was one little spot and then did nothing. My doctor called him and he did do the heparin instills. I asked about pain meds as my doctor wanted the doctor treating me to take care of the pain meds. He looked at me and said "I don't know why you would need Vicodin". I immediately found another uro who treats IC. He did a cysto under anesthesia and found I had mid range IC as I have no ulcers.

Again I hope you have a condition that can be treated or cured, but I had 2 conditions, that even with testing, were not truly discovered until 14 years later.