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Should I do another bladder instill or not??

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  • #16
    Hey Waterflow.
    I just talked to the nurse and she said she talked to the doctor and told her what happened about me not being able to pee after the instill. She said the doctor told her I did not have a reaction at all and that she reccommneds I continue with the instills as that is my only hope to get better as that is all that works.

    I told the nurse that I am sorry, but I disagree and that I consider what happened was a reaction to one of the meds. I asked her if it was possible to maybe omit a couple of the meds and maybe just use the steroid and heperain. Well the nurse said that she doubts the doctor would go for that since you have to use all those meds for them to be able to work.

    well, I told the nurse that first off, marcaine is just a numbing agent and will help only with the pain until it wears off. I told her that I believed that the steroid and the heperain would be what would help in the long term. I also asked if she could leave out the biocarb and the nurse got all upset and asked me if I was a pharmacist or something since I was asking about all the drugs.

    I am so mad I am literally crying as I write to you. She said that it was no big deal , that I could just catheterize myself if I could not pee, that alot of people do it and it is no problem. I told her that for me since I have IC IT IS A PROBLEM to cath and it is very painful. Besides. I told her that what if I do the instill again and have a worse reaction the second time around. She did not know what to say. She just said that the instills is all there is that will help me get well.

    I dont know what to do waterflow. I am so frustrated. Thanks for listening. I think I may have ****** off the nurse because I told her what I thought.


    • #17
      Don't worry about ticking off the nurse. I've done it many times to many of them. You have to fight for help at times so don't let her or the doctor tell you all you have are the instills. You are going through what I went through with my first doctor but at that place there was no bladder problem. I really do think you should find another doctor. Maybe ask around even? My Uro did not know about the tens being used for IC pain. i foudn out about it on the interent and asked if I could try. He said sure. You need a doc who is willing to listen and try. Hope things work out for you. Are you still having the instill done on Friday?


      • #18
        Hi Waterflow.
        I have no clue what I am going to do. I cant make up my mind. half of me is saying "no, dont do it" and the other half is saying " but what if it will help in the end".
        I talked to the doctor and she thinks I should keep doing the instills and says that there is nothing else left to help me. Of course it is easy for her to say since she is not the one who could not pee after the instill.
        I aksed her to omit the marcaine and she said she could not. She said without the marcaine, the instill would be just to painful. She said she could cut it down to 25ccs of the marcaine though. I am not sure if that will help or not.
        She made it seem like it is no big deal to just cath the stuff out if I cant pee. Well, for me it is really painful. Plus, if it swelled me up last time, what if it is worse the second time around. I just dont know. Her idea is that it should get better each time. I have to do six instills in total, doing 1 once a week. I dont know though.
        I did the instill last Friday,and got over the side effects by late Saturday evening. Then Sunday and Monday I felt less pain in the bladder from the IC so I thought maybe something in the instill may have helped, but by Tuesday I was in pain again and today I feel just awful. I am swollen inside and when I pee, I cant get a strong stream because of everything being so swollen inside. I am so confused. Am I worse because of the instill, or does the body have to adjust to the instills.
        My hubby and I cant seem to figure out what to do next, or if I should go through another instill or not this Friday.

        I am going to see another urogyne for a second opinion, but dont know what to do in the meantime, as I am pretty much stuck with her.
        So that is where I stand right now. Any suggestions are appreciated. :o)