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  • #16
    I'll add that when your very well-known-in IC-circles urologist tells you to stop crying and act like an adult when you are 20 years old and in an enormous amount of pain from the diagnostic procedure he is doing without any sedation or numbing medication -- it's time to find a new doctor.

    An experience like that could very well traumatize a patient enough to develop a very strong dislike of medical providers.
    Mom to two littles (remissions while pregnant/breastfeeding)
    Sufferer since mid-90s
    Finally dx'd properly much later

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    • #17
      Re: When to change doctors:

      Hi OllieR,

      I wonder if I might ask you a few questions about the success of your cystectomy. I have the bleeding glomerations in all 4 quadrants of my bladder. I have had IC for 25 yrs. It all started with a strictured urethra that was not allowing my bladder to empty completely causing stagnate urine to accumulate causing 2 yrs of chronic non-stop infection before the stricture was found. That was 1988-1990. By then, I had IC triggered by all this "tumult". I then had a hysterectomy last year and awakened from surgery with terrible horrible burning in my lower bladder/urethra. It was non-stop. I was put on daily instillations of Solu-cortef, Marcaine, Heparin for months at a time before I was able to scale back on them doing them every 3 to 7 days. Then I did the unthinkable. I had intercourse with my husband after abstaining from it for 7 months because of my precarious situation. The burning and frequency returned with a vengeance and I had to get back on the daily instillations. I was then hit with an infection from the frequent cathing that went undetected because I had dismissed the symptoms as just IC. It invaded my kidneys before it was found. No sooner had that one cleared that I got another infection. If these instillations ever fail me and this new Liris device (I'm supposed to participate in a trial) should fail, I will be considering cystectomy. I understand that your symptoms and exactly where the pain is coming from, really matter when deciding to do a cystectomy. Often they "predict" which patients will do well and which will not. Those with pelvic pain whose problem may originate in the tissues connected to the bladder usually don't do well with cystectomy because the problem did not originate inside the bladder. When I do an instill, then roll over on my stomach, the pain lessens almost immediately and feels so good. It is like........Ahhh!! I know that my pain is coming from the lining in my bladder. I also have PFD as a result of 25 yrs of IC. I don't have the ulcerative IC, I have the bleeding glomerations and inflammation on the walls of my bladder. I don't have the shrunken bladder. I guess what I want to do is find someone with my symptoms and "exactly my problem" and see how their cystectomy worked for them. I can't have intercourse right now. I just wondered if bladder removal might solve this problem as well (poor hubby). I would welcome your input/advice. Sharon

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      • #18
        Re: When to change doctors:

        OllieR, I'm still kind of new at this posting thing. I thought that I posted a reply to you, but I noticed it posted further down on the thread, so I don't know if you are going to receive that entry. I name you at the top and my name is Sharon at the bottom. I may have accidentally sent my inquiry to someone else. LOL If you scroll down you will see what was meant for you. I don't know. Maybe this message will wind up just the below the one I just posted, or maybe you will get that inquiry. I am still kind of a "dunderhead" when it comes to this site. Oh well, it may give some folks a chuckle. LOL
        Sharon

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        • #19
          Re: When to change doctors:

          I've been to 4 different urologists & the one I'm currently seeing had given up & referred me to someone else in the past, but then he gave up and referred me back to her. I don't really want to start over again but I'm not happy with my current care. I'm supposed to get bladder botox at the end of the month when my urologist is back from vacation cause apparently we've exhausted all other options.

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          • #20
            Re: When to change doctors:

            If you're not comfortable or happy with your doctor, choose another one until you find one are comfortable and happy with. It can be time consuming finding one that's just right for you but your health and peace of mind are worth it. You just stated that you're not happy with your current care so why stay with the one you have? Hopefully you live in an area where you have other urologists to choose from. Can you search on the internet for someone else, perhaps? Read some patient reviews? Or call the office of a potential doctor before you make an appointment and find out if they have much experience with IC patients? For every kind of doctor you see, you're putting your health, well-being and even your life in their hands. So, yeah.. it's important that you trust them, like them, and are comfortable with them. Don't settle just because it's inconvenient to find another.

            "When you gotta go, you gotta go!"

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