Interesting reading on IC diagnosis

[Paso]

http://www.urologytimes.com/urologytime ... 9&pageID=1

[Andypan]

I agree, very interesting reading!

I have gone through several urologists that did not follow proper treatment protocol for IC. As a result, I ended up in terrible shape, trying to survive one day at a time.

I went to see Dr. Payne and he saved my life. My quality of life has gone from pre-suicidal to enjoying life again, with minimal pain. He is one of the few Uro's who really understands IC.

An interesting note: He and Dr. Anderson (AHIP) are the bulk of the neurourology clinic at Stanford.

Andy

[Paso]

Andypan,

Please explain what he did and how it affected you. How do you feel today? Pain and frequency?

[Andypan]

First he reviewed my history. Then he did a series of video urodynamics test. He then scheduled me for a cystoscopy with hydrodistention and at the same time, he removed a sizable ulcer from the wall of my bladder.

It had a dramatic effect. Prior to the procedure, I was in pain for 23 hrs/day, much of it severe. I would go to work for 1/2 a day, and then come home and spend 12 hours in bed. I was getting ready to file a social security disability claim. I was a mess. I was voiding 25-30 times per day, and having to catheterize myself approx 2 times/day.

Now, in comparison, I feel great! I void about 10 times per day. My bladder capacity went from 4 oz to 20 oz, because I am no longer in constant pain. I am in pain for only about 15 minutes/day, and this pain is much less severe.

Now I can once again do the "Stanford/Wise-Anderson Protocol" (trigger point massage & relaxation) to treat my chronic prostatitis / chronic pelvic pain syndrome symptoms -- I still have IC and CPPS, but now I can treat my symptoms without going into an accelerating pain cycle.

I'm back to work full time and life is good again!

One other thought -- I sensed that Dr. Payne was frustrated and embarrassed by the inadequate attention that I had received from my other urologists.

Funny, looking back, all my other uros knew about IC, but upon mentioning CPPS, they stopped listening because it wasn't a "medical" condition.

Andy

[Paso]

Andy,

Thats great news. I am really happy for you. Do you sense that Dr Payne belives that IC and chronic prostatitis / chronic pelvic pain syndrome is closely linked? DO you think your IC will benefit from the protocol treatment? Also what did Dr Payne say about the long term outlook for your IC? Does he think he can keep you this way or even make you feel even better?

/Paso

[Andypan]

Paso,

I think Dr. Payne senses that there must be a connection between IC and CPPS. After my urodynamics test, he said that my pelvic muscles were so confused by my pain that they were forgetting how to work properly. By his own admission, he specializes in IC. So, I'd like to believe that if he was seeing a patient who did not have IC, or an IC patient that he could not help, he would refer him over to Dr. Anderson if he suspected muscle problems.

I don't think my IC will benefit directly from the Stanford/Wise-Anderson Protocol. However, now that my IC is under control, I think the protocol will be beneficial for my CPPS. Sometimes it's difficult to distinguish between the IC and the CPPS.

Long term? Dr. Payne feels pretty confident that My IC will gradually get worse again. But, now I know what needs to be done to keep it under control.

On a related note, I just received the latest ICA Update from the Interstitial Cystitis Association. There is an article in it entitled "Can Physical Therapy Help You?". In it, they discuss internal massage and even have a couple of comments from PT Tim Sawyer. They don't mention Anderson/Wise but it is still a step in the right direction.

They also cite a Stanford website that has lots of good info on the female pelvis, muscules, etc. Check it out.

http://summit.stanford.edu/ourwork/PROJ ... cywebsite/

Andy

[robertpagen]

Yes, I have found over the last few years that anytime I asked about the possibility of IC as a cause it was discounted because I was a man. Even in the face of negative cultures of prostatic fluid the uros would still hand me doses of levaquin and insist that bacteria were "hiding in the cave". Those were the uros who were not very good. The more accomplished ones in Manhattan with a reputation would say that there was nothing to be done, and that it was somehow related to anxiety. One even offered to resection my bladder neck. I would have done it too if a good man Dr John Coleman had not talked me out of it.
Keep in mind that IC as a cause can be tough, as only diet and lifestyle changes can meaningfully effect it. Dr Simon Hall, Chief of Urology at Mt Sinai in NY told me that IC is almost exclusively seen in higher socioeconomic groups, indicating that it develops from a way of interacting with life. An interesting question.

Robert Pagen