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  • Urodynamics done today....

    After not having much success with oral meds, physical therapy, diet, and a host of other treatments, my urologist suggesting urodynamics to get a better picture of what is going on, which I had done today.

    It was not a pleasant experience. I wasn't expecting it to be. My biggest problem is catheters. I find them extremely painful. they used the smallest one made, but it still about put me through the roof. They even gave me a fairly strong dose of valium before hand to try to relax things "down there", but it didn't help at all. It took them several tries to get the catheter into my bladder. Each time was excruciating. Once it was in, the rest of the testing wasn't too bad except I had a lot of difficulty emptying my bladder with the catheter still in. I was finally able to "go", but it took quite a while. This evening I'm having a lot of pain when I urinate.... They gave me phenzaopyridine for the pain, but it doesn't help all that much. I'm also taking some tylenol. I don't know of any medical procedure I've ever had done that comes close to the pain I experience with a catheter being inserted. It's absolutely horrible for me and I'll never have it done again regardless of what I'm experiencing... NO WAY!

    I met with the urologist after he had time to review the results and he said my problem is primarily pelvic floor dysfunction.. I've done many weeks of PT along with valium suppositories, but unfortunately I've not seen any improvement. So he said that because nothing else seems to be working the next step is to try the interstem... So, we'll see how that goes.. And the beat goes on.....

  • #2
    Re: Urodynamics done today....

    I'm so sorry you had an unpleasant experience.

    There's a link in my signature to American Urology Association Guidelines for Treatment --- I suggest you have a look there for possible treatments to try before considering interstim.

    Sending healing thoughts,
    Donna
    Stay safe

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Re: Urodynamics done today....

      Thanks Donna...I'll check that link out.

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      • #4
        Re: Urodynamics done today....

        Donna,
        My urologist specializes in IC and PFD. We've tried just about everything. I did several months of PT. I drove 300 miles (round trip) once a week to a Physical therapist who is trained in dealing with PFD (she has IC herself, so she understood what I was/am dealing with). We tried everything and I worked very hard at home doing the stretches, exercises, skin rolling, trigger point release, etc. I used up all of the PT that my insurance would cover. I also was on valium suppositories and gabapentin during that time to try to relax the pelvic floor. Prior to that I've tried all of the oral medications. I'm still doing all of the stretching, exercises, etc. here at home every day.

        I can't and will not do instillations. The catheter is horrible for me. I can't even begin to describe the pain... It's like someone shoved a knife up inside me. My problem is frequency...always has been. I've never had bladder pain like I've read other people describe. As far as diet goes, I know what foods and drinks to stay away from... Oddly enough, not many things bother me much. I have to stay away from very spicy foods and diet pop, but other than that I don't notice much difference in what I eat or drink. I pretty much just drink water. I never have liked coffee or tea.... I tried eliminating all wheat products, all dairy, etc. for a few months at one time but that didn't make any difference.

        In regards to my pelvic floor and overall flexibility, I'm extremely tight. I grew up when working out was all about strength and getting muscular....flexibility never entered out minds. At 67 years of age, getting some flexibility back is a very slow process but I'm working on it!! Mostly I need to work on relaxing the pelvic floor.

        I'm reading up on the interstem... My urologist gave me some literature and a dvd to watch and I'm doing some searches on the internet...

        At any rate, for me it's pretty much all about inconvenience as opposed to pain. I'm lucky in that respect. I'm also lucky that I live in a rural area so if I'm driving down the road, I can stop and go just about anywhere... I wouldn't make it very well in a big city!!! I just get tired of having to find places to "go" all the time, getting up at night, etc.... Aren't we all?

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        • #5
          Re: Urodynamics done today....

          HI Montana, I'm sorry you are having such a hard time. Can you tell me what medications you have tried? I have the frequency more than pain symptoms in common with you. The only time I have a lot of pain is when I exercise too much or I'm very bad with diet. Maybe I can help

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          • #6
            Re: Urodynamics done today....

            Hi... Well, I think I've tried most everything over the years. I started out with Elmiron along with amitriptiline and the hydroxyzine. I did those for 7 or 8 months if I recall (it's been quite a few years ago). They also tried flomax thinking it was a prostate problem at one time. I've also done gabapentin along with valium suppositories while doing physical therapy. I did physical therapy for several months (until my insurance ran out). I worked very hard during this time doing all of the stretches, skin rolling, pressure point release, etc. but really didn't see any improvement. I've had the hydrodistention and have been scoped 2 or 3 times and have had one "cocktail" instillation. I've also tried all of the more natural remedies I've read about...aloe vera, marshmallow root, and just about every herbal remedy and supplement anyone has mentioned. I have a drawer full of that stuff. I also do the acid reducer daily as supposedly that is beneficial.

            The one thing I've found that does help is desmopressin. It helps me with not getting up as much at night. It's a medication primarily used for kids who have bed wetting problems as it causes the bladder to fill up more slowly, but my doctor suggested I try it as I was getting up 5 or 6 times a night. Now I get up 2 and sometimes 3 times a night. I only take 2 mg about 30 minutes before I go to bed.

            As I have said, for me it's a big issue because of the inconvenience. If I don't drink too much water I go 15 to 20 times a day. Exercise doesn't bother me, although I don't run, etc., but still do all of the stretches and other exercises the PT had me doing and none of that bothers. I also do a lot of hunting (lots of walking, hiking in the hills, etc.) and none of that bothers.

            If you have some ideas that might help, I'm all ears!!!!!

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