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  • I give up- very long post

    Okay,
    I have tried and tried and TRIED to stay positive and work with my IC and other ailments but they've finally won.
    I'm in a major IC flare,but can't take pain meds because Opiods cause retention,(I took some last week and couldn't pee for hours). I have a cystocele and the way I understand it, that plus anything that slows the bladder or bowels,like narcotics or anticholenergics(sp?), can cause problems. I've been specifically told by my uro not to take any antisposmodics except my Klonipin for restless leg. Tylenol seems to irritate my IC. I've been drinking baking soda, taking warm showers, using heat and ice. Pyridium and AZO, btw, make me very queasy.
    So, I am peeing every other minute, in pain, not sleeping and not going anywhere. I had a urine culture done last Monday, but it was inconclusive, so my doctor's nurse cathed me and sent the urine from that to the lab. I will get the results tomorrow. BTW again, I am very hesitant to take antibiotics because I had a Clostridia infection(awful), the last time I did take them, and the chances of another one are greater after the first.
    In the meantime, my bowels are acting up,(IBS, leakage and maybe other problems), which I'm sure bothers my bladder as well. I am scheduled for a defacography on the 12th to see what's going on with my organs. I'm dreading that and have been putting it off but I guess I have to do it. A def. btw, is an MRI where they place some ultrasound gel into the rectum,(TMI?), and then take pics using the MRI,as you push the gel out, to see how everything is working. It's done in a closed MRI and I am SUPER claustrophobic.
    To add insult to injury, my other problem, which is rather embarrasing, vaginal spasms, are driving me nuts, and also irritating my bladder further. I went to a female gyn and told her about this, but she had no clue excpet to tell me to get an eeg and maybe brain MRI. I honestly do not believe this is in my brain, I think it's related to all my other problems, but no one seems to get it or even wants to discuss it. Even my female acupuncturist told me she didn't work with that and didn't want to.
    In the meantime, and the worst part, my family doesn't seem to get any of this. I thought my husband did, but some things he's said lately have made me believe otherwise. Really the only people I have who do get it, are all of you here.
    As I've written before, my grand daughter is having her Bat Mitzvah in Michigan(we live in VA.) in two months and we of course are supposed to go and be social etc. but all I want to do is hide in my bed and not come out. It might be easier if I felt like my daughter,(mom of Bat M. girl), got it, but she doesn't. Bottom line, no one is helping or listening and I'm too tired to try any more. Even the counselor I went to didn't really understand, and I got charged each time I was too sick to go, so I stopped going.
    For anyone who has gotten this far, thank you very much.
    I'm going to go have a meaningful discussion with my dog, who seems like he cares,(probably just wants steak)!
    Sorry for going on and on.
    Laurie

  • #2
    When you schedule the MRI be sure to let them know you are claustrophobic --- they will medicate you so it won't be so bad. Has anyone talked to you about possibly repairing the cystocele? I had mine fixed and have never ever regretted having it done.

    You will have better days.

    Warm hugs,
    Donna
    Stay safe


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    Comment


    • #3
      I give up

      Originally posted by ICNDonna View Post
      When you schedule the MRI be sure to let them know you are claustrophobic --- they will medicate you so it won't be so bad. Has anyone talked to you about possibly repairing the cystocele? I had mine fixed and have never ever regretted having it done.

      You will have better days.

      Warm hugs,
      Donna
      Donna,
      Thanks for reading that whole long tale of woe and answering so quickly.
      The MRI place knows I'm Claustrophobic, but for the test I need, they won't give my any sedation. Husband would come into the room, but he can't because he has metal in his body.
      I spoke to two different gyn's about cystocele repair and both said that with IC, they would not recommend it because they have both seen a lot of problems, mainly women not being able to urinate after the cystocele is repaired. One of them said, "are you feeling lucky"? IOW, you might be okay and might not. The other doctor said he used to do cysto. repairs for IC patients all the time and so many came back to him and asked if he could undo them because they couldn't pee and were miserable.
      Both docs suggested a pessary,but I've been hestitant to do that because of the chance of infection.
      Thanks for your kind and encouraging words. They help a lot.
      Laurie

      Comment


      • #4
        Again, I would suggest any type of PT, chiropractic, just to make sure none 'o that is interfering with your body workings. Regarding the odd spasms, there is a cable show I saw called 'Odd Sex' where the lady had your situation, seems to be a nerve entrapment. There ARE people who specialize in treating it. There's all sorts of things like that, including coccyxdinia ( you will need the correct spelling to look it up, sorry!) that's a problem with the last joint of your tailbone. I haven't had anything done with that yet, for a while I thought I'd have to, but the problem faded and there's always something else going on, you know how it is. also there's pudendal nerve entrapment as a possibility.I am more and more interested in general bodywork after having my knee problem solved by a chiropractor of all things! I want to try Feldenkrais technique to learn to move and sit correctly. Ergonomics etc. But it does sound like you have that very specific spasm and need specific care for it. At least google 'strange sex tv episode' and see if you can turn up the show and then the drs mentioned in it. Best of luck I know you are mad, been there too!

        Comment


        • #5
          I give up

          Meagan,
          Thank you so much for your reply and for not finding my post weird!
          I will do some research on google and see what I come up with. Interestingly, I did ask my doctor if the problem could be nerve entrapment,particularly the Pudendal nerve, but she had no clue and didn't even know how to test for that. I belong to an HMO so I'm not free to see any doctor in my area unless I pay out of pocket, which, I am beginning to think,might be worth it.
          Anywho, enough whining!
          Thanks again for the info.
          Laurie

          Comment


          • #6
            I requested an open MRI when I had one done due to my claustrophobia. I told them I would most probably have a panic attack if it were a closed MRI. Is there any way your HMO would go along with that for you?

            Comment


            • #7
              I give up

              Originally posted by earthlady View Post
              I requested an open MRI when I had one done due to my claustrophobia. I told them I would most probably have a panic attack if it were a closed MRI. Is there any way your HMO would go along with that for you?
              Hi,
              Thanks for the suggestion.
              I do usually have open MRI's but for the defacography test it has to be done in the regular machine. Guess I'll just close my eyes or something.

              Comment

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