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2nd round of BCG, anyone?

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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,

  • #2
    Suz, I'm sorry no one responded 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.

    Have your symptoms gotten worse over the 2 years or did they just not improve as much as you had hoped? Just curious.

    Good luck ~L~


    • #3

      Actually my symptoms started to recede radically within two months of finishing the BCG. I got to the best I was feeling after about six months. Pain level went down from around 7-8 most of the time to around 1-2 and frequency went down a whole bunch too. After about two years, and a bunch of stress recently - a colon surgery and sale of my business AND moving to a new state pain levels started going up again and I couldn't control with diet. I don't want to take pain pills. So, my uro and I decided to go another round of the BCG. Ironically I had a problem with my colon and spent last weekend in the hospital, so my BCG series is going to start next Monday instead of last Monday. I hope it works as well.

      A side effect of the BCG, or just a happy circumstance is that I haven't had a single cold, not even a sore throat since the BCG. Didn't keep my colon from rupturing though.

      I'll keep you posted on how it goes.