Inflammtion in ureters - Interstitial Cystitis Network Support Forum

carly · 06-01-2006, 12:31 PM

I saw my dr. (actually his nurse practioner as he is out of town). My IVP was great, my kidneys are better! She showed me the pathology report of my cystectomy and I had inflmmation everywhere. If you still have inflammation in the ureters, does that cause pain? Judith, Kara, Debbie, do you know? You can answer me and then switch back to Lara's post. Lara, I know how you feel. I still have the urges like I have to urinate. I told the nurse pract. today, it is frustrating because when you have IC (at least for me) there was a little relief in urinating. It is very difficult to feel like you have to go, and you can't. I do what Kara said, I tell myself you don't have a bladder. I still have pelvic pain also. I am going to try Nerontin. I was very depressed after my surgery, I started the antidepressant after my first visit with the visiting nurse and all I could do was cry. Antidepressan't didn't work for me when I had a bladder because they made it difficult to urinate. I don't know if I would have survived without them. Has Lara tried an antidepressant? I also got diagnosed with pulmonary hypertension last year which can be fatal. I think most people on this board have more than one disease. We DO understand how she feels. Like I said, I wouldn't even talk to my family for at least a month after I got home. I cried all the time. Kara is right, it isn't a contest. I am jealous that other people have no pain. When I talked to my uro, I was going to get the Indiana Pouch, and he called me the night before surgery and said he couldn't do it. I was not emotionally ready for an external bag. I have very sensitive skin and have a lot of skin problems. After reading this board, I realize that even people with the internal bag have problems. We are all in this together, and I will continue to pray for all of us. HANG IN THERE!!!

**Kara29** · 06-01-2006, 12:48 PM

Carly,

I think the answer could be yes. But as soon as the doc comes back he would be the better person to ask. I have been having back pain on and off with this revision some days are good and some days the bad and the pain requires some help. The doctor did not give me a reason, but I bet it does have something to do with ureters and kidneys being inflamed. I know for me, it's back (flank) pain. I don't know if it can cause other pain. It happened after my first cystectomy but eventually went away and I am hoping for the same with this one. Maybe I could do some research for you and see what inflamed ureters feel like to a patient like us. I would talk to your doctor though about it first. The nurse may not have fully known the answers or what she was seeing. If I know one thing in this world I know that both doctors and nurses can also be wrong about things too even when they have the best of intentions.

Does any of you other gals on this board know anything about this?

Where is your pain right now?

HUGS,

Kara Lynn

**Judith56** · 06-01-2006, 02:42 PM

Carly, how great to hear that your kidneys are better! As for inflammation I would assume that if something is inflamed there will be some pain involved, but I am not a medical professional. I am just going by common sense. As for the feeling of needing to pee, it took at least ayear or maybe more for that to go away in me after my surgeries. I used to sit on the toilet till the feeling passed. Judith

Jane J Prichard · 06-03-2006, 05:23 PM

I had some horrible flank pain about 8 months after the surgery. The doctor suspected a little reflux into the ureter/kidney but it went away. Several months later during a ct scan of the urethra to see why the IC pain was returning they discovered the left kidney was retaining urine. The connection of the ureter to the pouch was probably partially blocked by scar tissue. They were going to go in with a camera expecting the camera itself to unblock the ureter but the kidney specialist decided that the urine retention is not severe enough to warrant invasive surgery just yet. They are keeping an eye on it each 6 months by ct scan. I am very aware when there is the least bit of pain in my left flank, I don't want any kidney damage. I have had a few slight cramps in that kidney from time to time but they didn't last long.

So far, so good.

Jane