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2nd round of BCG, anyone?
Hi Diane, and everyone,
I hope everyone is improving all the time!
I am wondering if anyone has done a second round of BCG to get rid of the vestiges of pain and frequency once and for all. ???????
I did the 6 weeks of BCG instillations about two years ago. I felt like I had the flu while I was having the treatments, but only missed a few days of work each week. I had to skip a week of treatments because I got a
bladder infection, but then we took care of that and I continued.
I started feeling better before the end of the treatments and by two months was really improved. After six months I felt like a new person.
(BTW, I am also, and still using Cystistat, as well, and between the two things, and my IC diet I don't need any pain meds. I do use one Dalmane sleeping pill every night in order not to get up as often. My uro thinks that keeping the bladder stretched by not peeing often is really important.
I also do have problems with shutting down and not being able to start the flow sometimes, and so have had to learn to self-cath, but the necessity for that is really infrequent now. I've done it once in six months! And at my first visit to my new uro I couldn't go and they had to cath me - but they were going to anyway.
I have moved to Vermont and am trying to round up an IC group in Burlington, with the help of my new uro, who is a female and VERY nice and knowledgable, and open to new ideas.
Hugs to all,
Suz
I hope everyone is improving all the time!
I am wondering if anyone has done a second round of BCG to get rid of the vestiges of pain and frequency once and for all. ???????
I did the 6 weeks of BCG instillations about two years ago. I felt like I had the flu while I was having the treatments, but only missed a few days of work each week. I had to skip a week of treatments because I got a
bladder infection, but then we took care of that and I continued.
I started feeling better before the end of the treatments and by two months was really improved. After six months I felt like a new person.
(BTW, I am also, and still using Cystistat, as well, and between the two things, and my IC diet I don't need any pain meds. I do use one Dalmane sleeping pill every night in order not to get up as often. My uro thinks that keeping the bladder stretched by not peeing often is really important.
I also do have problems with shutting down and not being able to start the flow sometimes, and so have had to learn to self-cath, but the necessity for that is really infrequent now. I've done it once in six months! And at my first visit to my new uro I couldn't go and they had to cath me - but they were going to anyway.
I have moved to Vermont and am trying to round up an IC group in Burlington, with the help of my new uro, who is a female and VERY nice and knowledgable, and open to new ideas.
Hugs to all,
Suz
I don't know much about it since I haven't done it personally but I did a lot of research and talking to my doctors, etc. when I was going to do it last summer. But I did hear of some people who did it more than once - up to 3 times - in order for it to take the full effect. I remember you were always helpful in answering my questions so thank you for that. Do let us know how it goes. 
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