What about the IC?

[danno]

I understand that muscle tension is important and something I have to resolve with a PT but I think that my fundamental problem is IC - as in a specific irritation in the bladder wall. Was diagnosed by hydrodistension. If I neglect to treat this directly won't I be wasting my time? Does anybody have any advice about bladder installations? DMSO? Is Elavil itself enough?
Wish I had a doctor who had enough knowledge/time to help me properly. I feel like I'm constantly grasping for crazy solutions.
Meanwhile had another PT session today and am feeling sensitive.
Dan

[Andypan]

Dan,

I've had IC for almost 9 years and the last 3 have been hell. I tried the Stanford/Wise-Anderson Protocol, but my IC was so advanced that the PT didn't help at all. In fact, it made some of my symptoms worse.

It's very difficult to find someone competent to help us with CPPS, and as you probably know, doctors who know anything about IC are even harder to find.

But, I'm happy to say that as of 7 weeks ago I am much improved.

Here's the short version of my story (maybe not so short).

8 1/2 yrs ago had urethral burning & bladder pain. Saw 2 urologists that couldn't tell me what was wrong. Had prostate surgery (TURP) in 1997 to fix BPH (swollen prostate). Had bladder surgery in 9/98 to remove two "spots" on my bladder wall (my uro didn't recognize them as Hunners ulcers).

Since this time, ever so gradually, I developed CPPS, and my bladder and urethral pain increased. The last 3 years were hell. I was in pain 23 1/2 hours out of each day. Much of the pain was debilitating. I would go to work for about 3 hours each day, then come home and lay in bed the rest of the day. I was catheterizing myself approx twice each day because my muscles were so screwed up from the pain they couldn't recognize when I had to go. I was voiding 30 times/day. For 2 1/2 years, I wasn't able to sleep for more than 2 hours without waking from the pain.

In 9/03 I went to CA to see Dr. Anderson at Stanford and Dr. Wise. These are two wonderful and caring men. I can't tell you how much time I've spent on the phone with Dr. Wise over the last 1 1/2 years. He is always caring and patient, and responds promptly. However, my muscles were so confused, and I was in so much pain, that the PT/relaxation did not help.

I got referred to a teaching hospital (Colorado Univ. Health Sciences Center) and they implanted the Interstim neurostimulator. What a waste. I can't believe my insurance company approved this $50,000 surgery without even calling me. The only good thing that came out of this is that my doc at CU admitted that he didn't know what else to do so he referred me to Dr. Payne at Stanford. He is the other 1/2 of the neurourology dept at Stanford along with Dr. Anderson.

Anyway, he suspected immediately (after some urodynamics tests) that I had more ulcers. In 10/04 he performed a hydrodistention, and did remove one large ulcer.

I woke up from surgery and knew I was much better. My pain is now minimal. I've now been to Stanford 4 times. Even though it is 1300 miles each way, I feel that I'm getting quality treatment for my IC/CPPS. I am now well enough to restart the Stanford/Wise-Anderson Protocol with internal massage (Dr. Anderson gave me an Rx for their new self-massage tool) and do the Wise relaxation tapes.

I've never done the instillations but that was the next step if this surgery didn't work. I did take Elavil about 3 years ago and I remember it as about the only drug that helped with the pain. I had to quit as it gave me retention.

Keep looking for your solution. It seems that whatever treatment works for one of us does not work for all of us.

Andy