Biopsy done - doctor puzzled

[trinity]

Hello all. I had my bladder biopsy done on Monday and to my surprise when I went to the hospital my doctor informed me that he wanted to do other tests and needed my permission. He also did a urodynamic test, another cystoscopy, biopsy, and a full pelvic exam. During the urodynamic test when they were filling my bladder with water it was almost immediately painful and at 6 oz. I couldn't take the pressure anymore so they had to stop. I was put to sleep for the rest of the procedures, but when I awoke the doctor said that my bladder seemed pretty normal and it was large enough to hold a lot more water(urine), but for some reason my nerves are kicking in almost immediately telling my that I have to go "really bad". The rest of the test results will be in within a week, but this was definetaly not what I thought the doctor would say. My first uro (the idiot that he was) said my bladder had thick hard walls, scarring, and cystitis cystica...the specialist said there is hardly any of it. I'm glad I went to the specialist - but it makes my wonder what the heck is going on. If it is "my nerves" - how do they even fix that? Where is the burning coming from???? I'm so impatient - I wish I had all the test results now. Impatient - Trinity

[Sparky2]

Hi Trinity:

God, you and I have the exact same problem. I was first diagnosed with IC last Dec., but since then I have been told that I have a neurogenic bladder instead. My bladder starts spasming just like yours as soon as a minute amount of liquid gets to it.

My first uro saw a little bleeding at the bladder neck and assumed it was IC. My new uro saw the same thing, but said it could have been caused by the scope itself. She then did urodynamic testing a few weeks ago that confirmed her suspicion that I do not have IC after all.

Well, after learning that I had a neurogenic bladder, I was referred back to my neurologist. (I've had two back surgeries over the last year and a half - the same disc both times L5-S1). My neuro concurred with my uro's findings; that is, I have detruser instability most likely related to my S1 nerve being compressed for so long by a very large chunck of my disc.

As it currently stands, my neurologist does not think that the nerve damage is permanent. Rather, he thinks that my nerves have simply been supersensitized/over-irritated. Because I'm so distrustful of doctors at this point, I have a hard time believing him. I mean, this has gone on for over a year now.

Anyway, I have been taking a drug called Baclofen for the last six days per his recommendation. It is a muscle relaxant that has helped quite a bit with the pain of those ridiculously bad bladder contractions. (Does your bladder feel like it's vibrating all the time?) Also, I am taking Vicodin and Remeron to help calm the nerve pain that I feel everywhere in my body right now.

In six weeks I will see my neurologist again. He wants me to begin non-aggressive PT at that point for my back. I'll let you know if any of these meds and/or physical therapy helps.

In the meantime, get on a med like Baclofen Detrol, or Ditropan. It should help immensely with the pain and your bladder capacity should get better. Also, make sure that you consult with a neurologist who will want to rule out possibile underlying neurological conditions which could explain your overactive bladder.

Take care and know that you are not alone.
Lynne

[BrendaD]

Why did you first doctor tell you that your bladder walls were stiff -- what test did he do? Did this doctor do a hydrodistention? I don't know how else you could judge whether bladder capacity is normal or not. My uro did a hydro distention (under general anesthesia) and at 400ml my bladder began to tear. He should have been able to fill it much farther, so he made the diagnosis of hard and stiff bladder walls. And I agree with his diagnosis. Although, in its empty/resting state, my bladder would look like normal size and, without the hydro, a doctor might judge it to be of normal capacity. But nothing could be further from the truth. My bladder capacity is only about 50mls, probably what the bladder can hold without the walls stretching at all.

[trinity]

Lynne and Brenda thanks for the info. My first urologist did do the hydrodistention, but the specialist did not because it caused an extreme amount of discomfort for weeks after it was first done. The neurogenic bladder thing sounds kind of scary, but at times it does feel like my bladder is vibrating - but I always take that as a "bladder spasm". I guess I will have to see what happens. I was on Ditropan and Detrol for a little bit - but they both gave me really bad headaches. I'll have to let you know what the doctor says. Lynne if it's a neurogenic bladder I'm going to need more of your "knowledge". Thanks - Trinity