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  • here i am again

    still in constant 24/7 pain. still getting nothing. tried everything. done the cath with meds little relief. seems after the lidocaine wears off to cause me to flare. i am still eating bout 100 tynelol pm week, telling dr's this. i am losing hope. after 7 years fighting and no relief, i am losing my strength to keep fighting. i don't want to get high, i just want relief to be a mom to my kids. just fustrating how we get treated. i don't know what else to do. if i change dr's they want to try this try that, no pain meds. i don't have time or patience for this wait and see approach. i honestly feel like taking darn bladder out myself. i hate this disease and stupid dr's. why is it so hard for people in real pain to get relief, but others get it. my niece husband who had knee probs gets it all the time. i have ic, endo, osteoartrititis, deg, disc, psoaratic arthe. ovarian cysts, had leg surgergy (rods and pins ankle and knee) but i am treated like a junkie it seems. wth? i hurt sooo much i don't feel like fixing my hair (just put in ponytail) no makeup don't feel like putting on or have the money. can only wear baggy pants hurts to have constricting ones one. i mean god what do i have to do to get some relief???
    it has taking everything out of me fighting this and this system.

  • #2
    I am so sorry that you are suffering so horribly. If you havent asked for a referral to a pain clinic yet, then it is definately time for you to do so. If your Uro says no, ask your GP, if he says know, ask your Gyno. If the Gyno says no, ask your Rhematologist. Someone has got to help you! I truly think that a Pain Clinic will be the answer for you. I hope and pray you get a referral and get into one very soon. I hate to know that you are suffering so badly.

    Hugs,
    Amy

    Comment


    • #3
      Even with what you have said, I still think it would be a good idea to see another uro for an opinion. Even if the most effective treatment for you is not found immediately, they may find something --- and you could feel better.

      I especially think it's important for you to get a pain specialist referral. If your uro won't do the referral, ask your primary care doc.

      Warm encouraging hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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

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      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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      • #4
        I have asked every one of em. They each believe their treatments will be sufficiant. I am on all kinds antidepressants, zanax, weak muscle relaxer. supposed to go to another uro monday supposedly to help get my pain under control i am at the point i can't stand waking up everyday cuz i am hurting and dread moving. i can't keep waiting on their non-sense i need the pain to stop, then they can experiment on me all they want. i have told them this. are they stupid or what. i have spelled it out for them that i have actually seriously considered just stabbing my own bladder so some one would have to fix it. i mean if that don't tell you someone is in pain what does. why does everyone treat chronic pain folks like junkies? if u go to stupid er here they treat u the same. i am just soooo beat down by this. i don't know how to get the point across. i have asked nicely, tried every approach. tried the ice heat pad everything. it just comes right back. it has been over 7 years since hurting. with no treatment til whithin the last 6 months. the elimron seems not to be helping so far. has my bladder reached a point of return? i just want to be able to clean my own house, cook for my kids, be a mom, play games with them, and maybe have sex. is that sooo wrong. itn't it amazing how when sick the simple things u miss in life the most. i just feel like i aint even functioning, just surving another day. just keep me in ur prayers. i really hate coming on here complaining.

        Comment


        • #5
          Hi racegirl

          I am so sorry you are in so much pain and no one will help you. maybe you could bring your husband if your married, a family member or a friend who can go with you and vouch for you. maybe the most compassionate one of the docs, if you go there with someone, will give you the referral to the pain clinic. please dont give up.

          Comment


          • #6
            Racegirl, I have been where you are, only I think it was nine years -- being treated like a junkie, unable to get out of bed, take care of my kids, myself, no pain relief. It's a living hell. But I survived and finally found the right doctor, even though he is 70 miles away in another state. It's worth it.

            I have also found, as someone suggested, that bringing my husband along to dr. visits usually gets me taken more seriously. It's ridiculous, unfair and sexist, but if you can, do it anyway, because it can really make a difference.

            I am so sorry that this is happening to you, I can't tell you how much I sympathize. I wish I could do something to really help you, but all I can do is share my experiences and hope you can hang on until you find some help.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn
            ___________________________________________________

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


            On the Beach with IC

            Comment


            • #7
              I will try to bring my roommate along. My next dr appt he has to work. It kinda hard to bring someone in room if they doing cath or talk about my urethra or pelvic area in front of just anyone. And lord knows I wish it hadn't been nearly 3 years, but it has. I sure ain't forgot how, but that is the furtherest thing on my mind. (sex or close to) Maybe i can try to explain situation that to dr then tell him to come in. i am doing my best not give up still hanging in but just by thread. so tired of fighting with them. i just want to feel ok again. just don't understand some these stupid dr's. i am just going to have to go nuts on em and demand something or referral.

              Comment


              • #8
                God I hate these doctors. They think people that suffer from IC are junkies and its all in our heads. I am so glad my doctor isnt like that but believe me I tried to find a doctor closer to my home and they dont know anything. So I travel an hour to my doctor in Pittsburgh. But thank god my IC is stable and I only go once a year. You should not have to suffer. Dont give up. Keep fighting. I know its hard.

                Comment


                • #9
                  I am so sorry you are dealing with this. I also am in pain all the time. My doctor refused to give me anything. The only thing she gave me was lyrica(which may or may not help, and if it will, it will take weeks to kick in). She also offered me baldder instills, which I did my first one Friday and it made it where I could not pee at all. I had to have the stuff cathed out. Pretty scary. My urine stream would not go back to normal until later the next day.
                  You are not alone. I also despise some of these doctors. They really dont get it. I guess they would have to be stricken with this disease to know just how painful it is.
                  Jen

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                  • #10
                    yeah, and i wish some these stupid snobby know it all dr's would get just one week with it.

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