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Hello All and I hope this is a good day. For me its not so good. I am reintroducing myself.
I joined this site a few years ago and have been reading the post but as a male didn't feel I had much to offer. Also an old guy that no one wants to talk to anyway.
I had supra-pubic pain after a procedure done in 96 and it was diagnosed and treated as a prostate infection until 2005. Dx'd in 05 by hydro-distention and biopsy under general anesthesia with I.C. chronic cystitis, chronic prostititis and BPH. My treatment was I.C. diet and cysta-q and he immediately scheduled my for a T.U.M.T. We did try Elmiron but all it did was make me sick and throw me into a flare. When I told my GP who Dx'd it as a prostate infection he was skeptical but changed his Dx to prostatosis saying that the bladder and prostate were anatomically close to each other so one could affect the other. He kept me on Vicodin and doxycyline as needed Since their was no cause nor cure I that I am aware of and I have searched a lot of sites I followed my treatment.
I was on retirement disability in 03 for other medical problems. Every Uro that I saw wanted to treat my prostate because they didn't think that men got I.C. ... at least the ones that I saw on referral. I went back to the Uro the Dx'd the I.C. in late 07 and told him I was using the restroom every two hours or more at night. He said I needed an uptick on my T.U.M.T. and scheduled for Jan 08. Into the procedure room I started on my back and when he put his instrument it felt like someone stabbed me with a sharp knife and the next thing I knew I was facing him. TUMT aborted and went down to the surgery center to see if there was any damage. He told me that my bladder was a problem. When I saw him 2 weeks later he told me to take a 3rd cysta-q. That was the last time I saw him. I told my GP about it and all he did was shake his head.
We Moved to Washington State in 08 and found what I thought was a good Urology office. I worked with a nurse practitioner there for two years. She said my bladder had shrunk and she had me drinking as much water as I could drink ... which really wasn't that much. We tried prostaprotek, cystaprotek, aloa vera and P.T. but none of those worked. In Jan 2010 I saw the urologist and he said that his evaluation was that my prostate was the problem and causing my bladder inflammation. He wanted me to sign a consent form for a carte blanche. He said he would go in and do what he had to do. I declined because the nurse practitioner that I had worked with over the last 2 years said that what he had in mind was very invasive.
Moved again to North Carolina in 2010 and now I am seeing a competent urologist...at least he is thought of highly on these boards and I did receive a recommendation from one of the ladies here. He told me that I wasn't on any I.C. meds. So we started with with the Elavil and a histimine which I couldn't take. The second thing we tried was Gabapentin for the pain ... the target being 900 mg a day. I tried a couple of 300 mg capsules and all it did was give me vertigo and make me sick. We cut back to 100 mg x 2 and that gave me the usual fatigue, but also I was confused and my behavior had changed to one of apathy. Also had watery stools. That was at 200 mg a day and over a 3 mo. period. I didn't see myself ever reaching 900 mg a day so I stopped those.
He mentioned that we would be doing a hydro-distention because that had given me relief in 05. Well...just had that done last Monday and he said my bladder had shrunk and was ulcerated. I knew it had shrunk because I had told him that. I am peeing about 20 ml or a little less than a ounce. In 2005 I was at 120 ml. 2006 -80 ml; 2007 - 50 ml and so on. About 10 minutes into the procedure He came out and told my wife that my bladder needs to be replaced. I know this is major surgery and just from the hydro distention it is almost a week and I am starting to feel better. I do have I problem with my right eye. Seeing lines occasionally and sometimes spots....so I will report this when I see him tomorrow. I am afraid that I am not fit enough for major surgery. I have had some relatively minor surgeries and have not fared well. I am currently cathed and carrying a night bag around. I have read the post on cystectomy's on the boards here. I have looked at most of the videos on youtube.
My wife is also on disability and is for the most part bed ridden. She has back problems and is also a chronic care patient. We don't know anyone here in N.C. and from what I have read and seen this is not something to be taken lightly. I will tell the good Dr. all this tomorrow but my question is when the Uro says it needs to be replaced Is there nothing else ? I don't feel with our current situation that we can do this. Any ideas would be certainly appreciated and I am sorry about this long winded post.
Thank you for reading if you have gotten this far and I would appreciate any input at all.
Charles Wood
I joined this site a few years ago and have been reading the post but as a male didn't feel I had much to offer. Also an old guy that no one wants to talk to anyway.
I had supra-pubic pain after a procedure done in 96 and it was diagnosed and treated as a prostate infection until 2005. Dx'd in 05 by hydro-distention and biopsy under general anesthesia with I.C. chronic cystitis, chronic prostititis and BPH. My treatment was I.C. diet and cysta-q and he immediately scheduled my for a T.U.M.T. We did try Elmiron but all it did was make me sick and throw me into a flare. When I told my GP who Dx'd it as a prostate infection he was skeptical but changed his Dx to prostatosis saying that the bladder and prostate were anatomically close to each other so one could affect the other. He kept me on Vicodin and doxycyline as needed Since their was no cause nor cure I that I am aware of and I have searched a lot of sites I followed my treatment.
I was on retirement disability in 03 for other medical problems. Every Uro that I saw wanted to treat my prostate because they didn't think that men got I.C. ... at least the ones that I saw on referral. I went back to the Uro the Dx'd the I.C. in late 07 and told him I was using the restroom every two hours or more at night. He said I needed an uptick on my T.U.M.T. and scheduled for Jan 08. Into the procedure room I started on my back and when he put his instrument it felt like someone stabbed me with a sharp knife and the next thing I knew I was facing him. TUMT aborted and went down to the surgery center to see if there was any damage. He told me that my bladder was a problem. When I saw him 2 weeks later he told me to take a 3rd cysta-q. That was the last time I saw him. I told my GP about it and all he did was shake his head.
We Moved to Washington State in 08 and found what I thought was a good Urology office. I worked with a nurse practitioner there for two years. She said my bladder had shrunk and she had me drinking as much water as I could drink ... which really wasn't that much. We tried prostaprotek, cystaprotek, aloa vera and P.T. but none of those worked. In Jan 2010 I saw the urologist and he said that his evaluation was that my prostate was the problem and causing my bladder inflammation. He wanted me to sign a consent form for a carte blanche. He said he would go in and do what he had to do. I declined because the nurse practitioner that I had worked with over the last 2 years said that what he had in mind was very invasive.
Moved again to North Carolina in 2010 and now I am seeing a competent urologist...at least he is thought of highly on these boards and I did receive a recommendation from one of the ladies here. He told me that I wasn't on any I.C. meds. So we started with with the Elavil and a histimine which I couldn't take. The second thing we tried was Gabapentin for the pain ... the target being 900 mg a day. I tried a couple of 300 mg capsules and all it did was give me vertigo and make me sick. We cut back to 100 mg x 2 and that gave me the usual fatigue, but also I was confused and my behavior had changed to one of apathy. Also had watery stools. That was at 200 mg a day and over a 3 mo. period. I didn't see myself ever reaching 900 mg a day so I stopped those.
He mentioned that we would be doing a hydro-distention because that had given me relief in 05. Well...just had that done last Monday and he said my bladder had shrunk and was ulcerated. I knew it had shrunk because I had told him that. I am peeing about 20 ml or a little less than a ounce. In 2005 I was at 120 ml. 2006 -80 ml; 2007 - 50 ml and so on. About 10 minutes into the procedure He came out and told my wife that my bladder needs to be replaced. I know this is major surgery and just from the hydro distention it is almost a week and I am starting to feel better. I do have I problem with my right eye. Seeing lines occasionally and sometimes spots....so I will report this when I see him tomorrow. I am afraid that I am not fit enough for major surgery. I have had some relatively minor surgeries and have not fared well. I am currently cathed and carrying a night bag around. I have read the post on cystectomy's on the boards here. I have looked at most of the videos on youtube.
My wife is also on disability and is for the most part bed ridden. She has back problems and is also a chronic care patient. We don't know anyone here in N.C. and from what I have read and seen this is not something to be taken lightly. I will tell the good Dr. all this tomorrow but my question is when the Uro says it needs to be replaced Is there nothing else ? I don't feel with our current situation that we can do this. Any ideas would be certainly appreciated and I am sorry about this long winded post.
Thank you for reading if you have gotten this far and I would appreciate any input at all.
Charles Wood
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