Why A Hydro/cysto????

[punkey]

I don't understand why so many people are having a hydro when Dr Deborah Lightner of Mayo Clinic wrote - and I quote "...given the lack of placebo controlled trials of cystodistention or of chlorpactin for PBS it behooves the surgeon to first do no harm..." I was told by my uro/gyn that I should have a hydrocysto to get a definite diagnosis. I refused and now have an appointment with a new urologist. As I understand it a hydro may make your bladder worse, it can cause necrosis of the bladder and it can rupture your bladder. Although the side effects do not happen often, I cannot understand why I should take the risk. I have been in a flare for 6 months, but am starting to feel better through diet and accupuncture. Am I being a wimp? If you have all the symptoms if the diet helps if an in office cysto does not show cancer then why go with the hydro. I don't get it.

[SharonA]

I had the cysto/hydro under anesthesia for diagnosis purposes. I had to know what was causing all the pain I was in. I certainly did not look forward to the procedure and I was so scared the morning I had it done, but I am very glad that I did. The doctor was able to test to see how much urine my bladder would hold without me feeling it. He also was able to look inside at the entire bladder wall to see what level of IC I have. I learned why I hurt so bad and could then begin to find what would help relieve those symptoms.

It is totally up to you whether you have this done or not. No one should try to force you to have it.

[ICNDonna]

It was very important to me to find out what was causing my pain. Then I found that hydrodistention actually helped my pain for many months. Since then I have had the procedure done when the symptoms get bad again.

As with any surgical procedure, there is some risk, but for me the benefit far exceeds the risk.

If you're feeling good with the diet and comfortable with your diagnosis, that's okay. There's some difference of opinion between doctors on the hydro procedure, just as there is on the potassium test.

Donna

[jen74]

I guess it all comes down to what you feel is best for you. I personally did not do the hydro. Two of my other doctors said that they did not think I should do it, or they did not recommend I do it, though the final decision was up to me. My hsband and I did research and decided against it at this time. Who knows in the future though, but for right now, I decided not to.
I have heard that it is rare for the bladder to rupture, but anything can happen, I mean heck, the same can happen when you have a colonoscopy.
My gastroenterologist( very smart guy) said that when they do a hydrodistention, they are hoping that by stretching the bladder beyond it's capacity, it will deaden the nerves and relieve the pain, but my gastro told me that what they dont tell you is that when your nerves regenerate, they can come back double, and you may end up with twice as much pain as before. This obviuosly does not happen to everyone, but it does happen. The uro docs for some reason do not tell their patients this can happen. I happen to have nerve pains in general, so I was advised by my gastro doc not to do this procedure, he said it would send me through the roof as far as pain in concerned he thought given all the nerve pain issues I have had elsewhere in my body.
I guess it is an individual thing. It does help some people. I hope I never get to the point where I have to have it done, meaning if I am at my last rope and nothing is working. That is the only time I would maybe consider it. I just in my own opinion, do not see how stretching a bladdder(which is a muscle) beyond it's capacity could be good. I mean think about it, when you over- stretch a muscle anywhere in your body, you know what that feels like, and it takes time to be able to use that muscle again without feeling pain. Well I kind of look at this the same way. Your bladder is a muscle after all.
Anyhow, I guess my advice would be to go with what you feel is right. You kind of know your own body and can go with your gut feeling. If you feel you should do it, then go for it, and maybe you will be one of the people who it helps. Good luck and hope what ever you decide, it all goes well.
Jen