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  • New doctors appointment!!

    Hi Gals,
    Well, I called another urogyne that is suppose to be knowledgable about IC. I got an appointment to see him on this coming Tuesday.
    I just now have to decide if I want to get another instill tomorrow or not. I believe it did help me some as I have less frequency and had a couple days with less pain, but had an awful experience right after the instill. I still say I reacted to something in the instill that made my bladder swell and I could not pee afterwards and had worse pain for a whole day and half. I just did not like the fact that it swelled me and I could not pee. I mean it took a whole day and half to get my urine stream back to normal. I was able to pee after they cathed the stuff out , but not well at all. And the catheter caused me a great deal of pain. I still say I had a reaction.
    Another reason I am getting another opinion is because I just did not like my doctors attitude at all. She basically told me that the instills are all that will help me other than doing a hydrodistention(which I wont do). and she said that if I do not do the instills, I will not get better and I will be in worse pain and bascially not to bother calling them as she has nothing else to offer me for pain. I thought that was an awful thing to say to me. I mean she is suppose to be a doctor who is suppose to help people, not give up on them without even trying all things possible first.
    Also, I did not like that she would not work with me. I asked her to maybe leave out a couple of the meds in the cocktail since I know something caused me to have a reaction, but she would not budge. She only said she could cut the marcaine down a little. I even asked her to leave out the biocarbonate and she said no. She said that this is what works for people with IC.
    I think everyone is different and we all are not going to react the same way. Her idea was that so what if I cant pee, just cath yourself, it is no big deal. Well, to me it is because it caused me great pain to be cathed. And her answer to that was that I have to go through pain to get better. Maybe that is true is some cases, but she should of at least tried to work with me. I mean just because some people do fine with her instills, well maybe I cant tolerate all those meds. But she is unwilling to change anything.
    So now the bottom line is, I either go do another treatment and pray it does not mess me up worse than last time, or I dont go and wait and see the new doctor next Tuesday and see what he says. The only bad thing is that when I talked to my doctor, I mentioned that I had to think about it if I wanted to go through the instill again, and she responded that I cannot miss any of the instills or they wont work, that I have to do them consecutively once a week for 6 weeks straight for them to help me, that if I miss any, then it wont help. Gee, I thought they were used as rescue instills and are suppose to work fairly quickly.
    Anyhow, thanks for listening. Any advice or info is greatly appreciated.
    Jen

  • #2
    My personal opinion (let me use those words so people here don't think I am trying to tell you what to do or that it is going against doctors) is that I would just wait until Tuesday. Since you are able to get in that quickly see what that doc reccommends and if it is to do an instill then discuss your concerns and if you feel comfortable try it then. After looking up your other posts to understand you situation after my reply this morning - you had an awful experience. There are not a lot of days between Friday and Tuesday. Hopefully this doctor will be wililng to work with you and help you more than the other one.

    Good Luck.

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    • #3
      Hi Aprilmae.
      Thanks for your reply. I am somewhat leaning that way. I have not 100% made up my mind, but I am thinking that Tuesday is right around the corner. I just got mad because I was thinking about just holding off with the instill until after I see this new doctor on Tuesday and see what he has to offer. But then my docotr says that I cant miss one instill or they wont work. I thought that was kind of odd. I mean I know women who use them on here just as rescue instills, meaning they use them only on bad days and it works for them. How would me missing 1 instill or waiting a few more days make it where the med will not work for me anymore. I was thinking, Geez, god forbid if I got really sick and could not make it in, or if I had a family emergency and could not come. That is just nuts.
      For you ladies who do the instills at home, is it true that if I was to miss one of the instills, that they would not help me then? My doc made it seem like I have to do it once a week for six weeks otherwise it wont help. I thought I read of some of you who use the heperain,marcaine,kenlog,biocrab instills only as a rescue instill on bad days. I cant see how me waiting a few extra days would mean that it will not work for me. I wish I knew for sure because I would like to see what this other doctor has to offer. If I dont end up liking this new doctor, I dont see why I cant just then go back if I decide to and do the instills again.
      Thanks again Aprilmae for the advice.
      Jen

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      • #4
        I had to skip a DMSO instill when I was doing those because of a UTI. It didn't hurt anything - it was the doc's reccomendation to skip it!

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        • #5
          Hi April.
          I wonder if the instill caused you to get the UTI. That also scares me. Although I did take a prevenative antibiotic before I did the instill, but you never know. And having IC and a UTI on top of it is awful.
          Jen

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