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  • Desperate for answers. Somebody please help

    First of all I'm not sure if I have ic or not. I am just looking for answers and I I was wondering if those could possibly be ic. I have no pain but for over a year now I constantly feel like I have to pee 24/7 that's really my only symptom, and I just can't takes this anymore can't somebody please let me know if they have been through this or am I the only one? I am really desperate. I hope to hear from somebody asap. And please feel free to ask me any questions.

  • #2
    P.S this has ruined my whole life, I dont even care if I was dead tell you the truth I really dont think it would be so bad. I kinda wish I was. im tired of suffering 24/7 with no relief I can't even sleep. Is there anybody out there that has ever felt like they have had to urinate 24/7 for this long with no relief? it's been about a year and a half. I am just so tired and exhausted

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    • #3
      Are you working with a urologist on a diagnosis so you can be treated? If not, I think that should be your first step.

      Warm hugs,
      Donna
      Stay safe


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      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.

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      [3MG]

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      • #4
        Originally posted by ICNDonna View Post
        Are you working with a urologist on a diagnosis so you can be treated? If not, I think that should be your first step.

        Warm hugs,
        Donna
        I went to a urologist and all he did was take a urine sample and pretty much brushed me off.. I am just at my wits end.



        is this a common symptom? has anybody else had to deal with this.. I just need somenody to talk to that is or has been through this. I am going to find me a new uroogist Monday...

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        • #5
          You are not the only one. I have very little pain, if any, but my bladder never feels like anything other than it's about to burst from the sensation of having to pee. And I understand how you feel, too. This is horrible and unrelenting. You really need to find a urologist that can check you for IC, or find another cause of your symptoms. The first two doctors I went to blew me off, too. One of them literally threw some overactive bladder pills at me and told me to come back in 6 weeks. Well, when you sometimes wonder how you're going to get through the next half hour, that's a pretty tall request. I eventually found a good doctor who is trying to treat my symptoms. I've gotten a little relief from some of the medicines she's prescribed for me but 1) some of them take time to work and 2) the same medications work differently for different people. At the very least you need to see if there's an infection or anything else going on and then go from there. One thing I've learned through this frustrating and exhausting process is that you really have to be your own advocate with this...disease.... disorder... whatever it is. Some of the doctors don't even believe it's a real condition so if you don't feel comfortable with what you're being told, find a doctor that will listen to you and treat you appropriately.
          Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

          Current medications/treatments:
          Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

          Previous medications/treatments:
          Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

          Comment


          • #6
            The urologist you choose to go to is critical.

            Maybe you could say where you live and other members here could give you a recommendation.

            There are a lot of lousy doctors out there.

            Comment


            • #7
              Hey. I'm sorry you are having such a hard time, but you have come to the right place. Whether or not you are "officially" diagnosed, this community is a great support system for anybody suffering from bladder problems!

              I have this feeling as well, all the time. Unfortunately there is not always an easy fix. You have to keep trying treatments until you find something that helps. I find physical therapy (things like relaxation and kegal exercises) to be useful for this. I have also had success with bladder training (you can "search" this to find lots of info on how to do it). It could also be helpful to keep a journal of when your symptoms are at their absolute worst and see if there is a connection to what you ate and what you did in life that day. Definitely try several urologists. I wouldn't be surprised if their were people on this forum who had been to a dozen doctors before finding a really good fit (of course many find a good one before that too!). A good uro will have lots of treatments for you to try. Unfortunately, pheonix girl is right about how it can sometimes take a bit of time to find a medicine that works well. I too, have a lot of trouble coping with the symptoms, but have had a lot of success going to a therapist and psychiatrist, to accept the symptoms I cannot change.

              I know this is hard. Give yourself time. Try to distract yourself. I know that right now it seems impossible, but you are seeking out help and obviously passionate about taking active steps towards improving your health which says to me that you'll have the confidence and strength to overcome this and have a better life again. You never know. I still have frequency basically 24/7, but have learned a lot of coping skills too and now it doesn't interrupt me when I want to do fun things. Oh, you'll also learn where all the bathrooms are lol! I'm not even kidding you, my brain as developed like a sixth sense on where all bathrooms are, even in places I have never stepped foot in before! I have had this disease for several years now, and am just now getting comfortable with my "new body." I'm sorry for the predicament you find yourself in - I would not wish it on my worst enemy. I hope my story of acceptance helps you feel a little better at least. If there is anything else you want to know, feel free to ask and I'll answer it as best as I can.

              God bless,
              Ollie
              Last edited by OllieR; 05-21-2011, 05:19 PM. Reason: typos
              Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

              24 yo F

              I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

              Comment


              • #8
                thanks for so many replies I really appreciate it guys. I havn't been dignosed , and I have been tested for infection several times and they all come back negative, I just can't stand this this isn't something I can get use to. Like I said for over a year now it has felt like I've had to pee 24/7 I mean I can go to the bath room and I soon as im finished it still feels like I have to go like my bladder is still full and I hate it.

                By the way I am a 28 Y/O male

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                • #9
                  also, im not sure if this relates to my problem , but there is microscopic blood in my urine and the Doctors don't know whats causing it.

                  Comment


                  • #10
                    I was recently officially diagnosed with IC and I have blood in my urine, too. I only saw visible blood one time when I had an infection but every time I give a urine sample, it looks normal to me but they always come back and ask me if I'm having my period. Apparently, lots of blood in there that I can't see. They thought I might have a kidney stone that was causing my symptoms but I had 4 ultrasounds/CT scans and they all came up clear. I also seem to pretty much run a low-grade fever all the time now, too.
                    Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                    Current medications/treatments:
                    Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                    Previous medications/treatments:
                    Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

                    Comment


                    • #11
                      Aw, sorry you guys are having so much trouble. Blood in the urine is never fun, and it's scary! I think it's good your doctor checked into those other things phoenixgirl to make sure, though it's disappointing I'm sure not to have an answer still. Unfortunately, a bad IC flare can cause blood in the urine. I have blood, sometimes visible, during a flare. Have your doctors checked for other things too solid, just to make sure?

                      Have you been cathed recently? Sometimes at appointments doctors cath for treatments or specimens and that can definitely cause irritation and bleeding.

                      Also, I run a fever in a flare. Sometimes I feel like my body must be confused and it thinks I have a bladder infection even though my brain knows I have IC.

                      But, yea, keep fighting to seek answers. I think your energy is really important in getting treatment with IC, so that's good to keep up! It sounds like you guys are having hard times so I really feel for you. It must suck. And that's a long time to go with having trouble, solid, so I'm sorry. It's hard enough being a girl, and I hear it's harder for guys, so it shows a lot of courage that you're still trying to find answers. Sometimes, too, ICers have to travel a little to get help. If you aren't finding help right in your town maybe think about looking into uros in your general area. There's a good list on this site!
                      Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                      24 yo F

                      I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

                      Comment

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