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  • Doctor Says Possible IC

    Hi everyone I am a newbie to IC & the boards. I started having a lot of pain the 1st of November but think it started before that b/c I had an attack at the end of Sept. I was in so much pelvic pain I couldn't straighten my body out but had to be curled up. It was like a charley horse, the only way I can describe it. DH finally talked me into going to the ER an hr or so later & by the time we got there (1/2 hr laterb/c of the drive) the pain wasn't so intense so we didn't go on. I didn't go to the doctor until the 1st of Nov b/c I thought I had a yeast infection which I didn't have. My doc treated me for P.I.D. at that time, the following week with a follow up since nothing improved he treated me for a UTI, with a follow up the following week with no improvements he suspected IC so he had me get a full pelvic ultrasound. It turned out normal. He set me up with an appt with a uro & I went to him Jan 19th. He believes I have IC b/c of the symptoms but with the way it came on so suddenly isn't usual, which now that I think back on it, it has been longer than that I just thought I was drinking more than usual or something. He put me on Atarax & Elavil. I go back Feb 16th for a follow up & if things aren't any better then he is doing the test systoscopy & put me on a med that has to be taken for 6 mo (not sure which one).
    December 10th I had a flare up as soon as I got on the floor at work. My twin sister works there too & I barely made it to the other side of the store to her I was doubled over in pain & finally sat down on her L cart then couldn't sit any longer b/c it hurt to sit & had to lay down b/c I thought I was going to be sick, was dizzy & burning up. I laid down underneath a clothes rack in agony. I couldn't get up off the floor to get in the wheel chair the pain was so bad. She got me to the ER & they said I had a UTI & the treatment didn't help with the pain. That's when I went back to the doctor & he suspected IC. I had a kidney stone removed May 2003 & my uro asked me about that & if they put in a stent which they did for 10 days. I don't know if he is thinking this could be some of the reason behind the IC or what.

    I started this job at the end of Sept 2003 & have missed so much work the past months b/c of this. My shift got a diff manager from 1st shift this past week & I wasn't feeling too great one day this week & so I called in. He made me come in. I didn't tell DH I was going to work but when I got home the next morn he asked where I'd been & I told him what happened. He told me next time you will not go no matter what they say. If you loose your job so be it. I did tell my manager that if I end up back in the ER or at the doc he willlll pay the doctor bills. I began working to pay off doctor & hospital bills & now with IC I can't seem to get ahead, that's the way it usually goes right? lol I have ordered a restroom access card b/c at work they keep the doors in back locked for shoplifting reasons but our breakroom is back in that area. With those doors locked I cannot make it up front. I have wet myself numerous times & a couple times have asked the sanitation crew to unlock them, if they are there, so I can go NOW which they have but they always lock them right back up.

    I also have a question about SS. Do you have to have IC for a certain amount of time before you can be accepted? How long does it usually take from the time you file till you get approved? My husband is wanting me to go this route b/c of missing so much work

    Sorry this is so long but it is nice to know others are in the same boat & can get some support from.

    Marlene
    Don't Let The Past Dictate Your Future!!

  • #2
    grouphug grouphug grouphug Hi and welcome to the boards. You will find loads of support and love and caring here. I am so sorry that you are going through so much pain. I am a cashier at Walmart and I know how hard it is to work in retil. I am lucky though, I can go to the bathroom when need be or a my suprevisors will jump on, I have gotten a drs note saying I need to be near the bathrooms at all times.Iam so sorry that you are in so much pain and flare. You need to take care of you. Your health comes first and that is what I am learning. get a drs note when you can't get into work, noone has anyone right to make you go to work when you can't. this is a free country. It makes me mad when I hear employers saying that you have to come in cause we have no coverage. Well managers get off your duff and cover someone for once in awhile. so sorry venting here. You can pm me or email me anytime. My email is at the bottom of the page.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie

    Comment


    • #3
      Welcome, Marlene. hi It sounds like you are in good hands with your urologist. It takes some time to rule out other things and find helpful treatments, but most of us do find some things that work.
      Kim

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

      *****************************

      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

      Comment


      • #4
        I agree with Kim about your urologist --- and it does take time to diagnose IC. Other things must be ruled out irst. Your symptoms might be from IC, but there are also some other problems that can mimic IC so I think it can be important to get that diagnosis. And once you are diagnosed, you can begin treatment, which may alleviate your symptoms significantly.

        The medication your doctor mentioned as taking six months is probably Elmiron.

        Sending warm healing thoughts,
        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

        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

        Comment


        • #5
          Welcome to the boards. hi I'm sorry you have to put up with so much. Hang in there. Hugs, kissing grouphug

          Melissa
          "Life is 10% what happens to you and 90% how you react to it"

          Read my story at: http://www.ic-network.com/patientstories/melissa.html

          Comment


          • #6
            Thanks everyone for your replies. Yeah I have noticed all the support & love & care everyone gives everyone on this board. kissing

            My primary doctor ruled out endometriosis & ovarian cysts, which I have been treated for ovarian cysts in the past. I have no bacteria but have had a trace of blood in my urine the past months.

            I can go to the bathroom at work anytime I just can't use the restrooms that are right there by me but clear across the store which most of the time I don't make it before I start losing some of it or am literally running (running funny at that) to make it. I am usually going every 15-30 mins. Most of the time I feel the need again as soon as I walk out but end up trying to hold it for a little longer. I guess I am afraid of what people think b/c I just came out of there.

            I have always been the type of person to push myself no matter how much pain I was in, I still did what I needed to do. I tried that the night I had a flare & ended up in the ER. I kept sitting down (barely b/c it hurt so bad to sit) & a minute later would get back up stock another item, sit back down,...this went on for 10-15 minutes till I couldn't bare the pain any longer, then it took at least another 10 min's to get across the store to my sis. We were both "diagnosed" for UTI's at the same time & she said I was in pain but nothing like this. I did end up starting my period the following morning after the ER & was dreading January coming around b/c of another flare.

            Everytime I go to the doc & get a pelvic exam it is excruiciating pain & end up hurting for at least a week thereafter. Talk about wanting to fly off that table whew.

            My uro is great, seems my whole family goes to him for kidney stones & this was my 1st visit with him. He just wanted to sit & talk about what I had gone thru & my symptoms. He had me fill out a questionaire on the severity of my symptoms which had all the signs of IC in the moderate stages. I guess he is taking one baby step at a time to rule out anything else & to see what does work or doesn't work. He did give me all the phamplets about IC. My DH actually read them which usually you can't get him to read anything like this. I guess he wanted to find out more about IC & what it is & all. I have always had painful intercourse but since my last son who is 7 was born, it has just gotten worse over the yrs & so I have turned DH away & he thought it was b/c of him. He has told me numerous times also that he always feels him hitting something (which is always painful for me) but we never knew what it was. He used to get all POed about me always turning him down but since I have been going thru what I have the past months & knows it has nothing to do with him he doesn't "bug" me about it. He has been great & very supportive especially since he read the phamplets. I have been so exhausted lately that I get home from work & sleep from 7 am till 8 pm but getting up every hr or 2 to go. I all of a sudden sit up like something woke me but I couldn't figure out what until I would wake up enough to know I had to go & bad. DH was getting on to me all the time b/c I have been sleeping so much & getting nothing done around the house or fixing meals, totally absolutely doing NOTHING. Between sleeping all these hrs & then leaving for work at 9 pm when have I had time?

            Wow sorry to go on & on. I better shut up. It is just good to get all this off my chest & to people who do understand.

            Marlene
            Don't Let The Past Dictate Your Future!!

            Comment


            • #7
              Marlene,
              Hi and welcome to the boards. I agree with the others, your uro sounds great and that is half the battle with IC. I am glad you found us and just know that we will be here anytime you need us.

              Jolene hi
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

              Comment


              • #8
                I would also like to add my welcome to you.
                have you tried the IC diet yet? that may help with some of your pain also a heating pad or an ice pack may help.
                I had to have ic for over a year before ss would even look at my paper work.
                I wish you lots of luck i do understand what you are going threw.
                (((((hugs))))))
                Rhonda grouphug
                Medicine taken daily or as needed:
                1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                2. MS.Cotin 100mg 3x daily
                3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                4. Fentanyl 100 mg Change every 48hrs.
                5. Gentamicin 80mg install after each rescue treatment
                5 Leviquin 500mg self start as needed.
                6. Klonopin 1 or 2 daily as needed.
                7. Prosed/DS as 1 every 6hrs as needed.





                I have IC, but IC doesn't have me anymore!

                Comment


                • #9
                  I am working on my diet which is overwhelming since I am a picky eater & don't care for a lot of foods. My main thing is cutting out the cokes (drink at least 1 20 oz at work) & hot tea and of course CHOCOLATE but I have cut out chocolate months ago b/c it hasn't been sounding too great. I do smoke & I have tried several times over the yrs, especially the past yr, to quit which I have not had any success with. I am going to ask my uro when I go back Feb 16th what I can use b/c I tried Zyban about 5+ yrs ago & had an allergic reaction & ended up in the ER & I would like to try something over the counter but I don't know what was in the Zyban to cause the allergic reaction & if that is in other OTC products I don't want to spend that much money on it not to be able to use it. People have suggested hypnosis but don't know where to go for that.
                  I received my IC restroom card & showed it to my manager, he left the back restrooms open that night but there is always another manager who keeps them locked soo... He told me he would talk to someone else who is higher up about keeping them unlocked.
                  I have started carrying a cell phone with me even during work b/c I never know when I am going to have a flare & at work if I go down & can't get to the phone I have one on me. I thought I was going to have to use it one day last week b/c I had a flare & ended up in the bathroom. I thought thank God for this phone. I don't want to go down with a flare & be on the floor & no one find me for awhile b/c they rarely check on me to see how things are going where I'm at & about the only time I really see anyone is at breaks.
                  Something for everyone to think about if you work & get hit with a flare & are down in a heartbeat like I was the time I was taken to the ER from work. Or even good for anytime anywhere.

                  Time to get the heating pad back out & lay down. I am still in the flare & finding it hard to sit b/c of the pressure.

                  Talk to everyone later & have a great day.
                  wink
                  Marlene
                  Don't Let The Past Dictate Your Future!!

                  Comment


                  • #10
                    If you're drinking coke and tea, it's not surprising that your bladder hurts --- both are irritating for almost all IC patients. I always take bottled water with me when I go anywhere --- and I've become used to not drinking sodas.

                    You can ask your pharmacist about the stop smoking over the counter medications. I quit about 20 years ago with the help of Nicorette gum --- I couldn't have done it without the gum.

                    Sending an encouraging hug,
                    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

                    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

                    Comment


                    • #11
                      hi Just wanted to tell you hi to the group. there is alot of info here. take care and i will see ya around grouphug

                      Comment

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