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Just told last week I have IC here is my story

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  • Just told last week I have IC here is my story

    Hello there,
    First of all thanks for having this web site, I have been reading all kinds of info and reading everyones ideas and stories and it is so nice to know that there are others that have what I have. I was starting to feel it was all in my head because I would go to this doctor and that doctor and they would either say the Urinalisis came back negative and I would insist on the pyriduim to help the pain and then take the macrobid also. I have had to have a hysterectomy because back in 1996 I had endometriosis so they took everything including my appendix. I have been to so many doctors over the years and on so many differnt medications and all they did was make me have nausea. My what I thought were bladder infections were getting more and more often, I would just get over one and then bam here would be another. I have had several tests over the years, they filled me up with fluid and made me pee and stop and pee , they filled my bladder with some dye , they snipped a sample, they did a balloon test on me they also took a flat scan xray, they did a ultrasound and all of this is very expensive because I don't have insurance. Anyway the last time I had a bad flare up was 2 weeks ago on a Saturday I was just thinking I was going crazy in pain, sweating and nausea, urethra felt like someone had a blow torch in it constant, peeing all the time if I would have had insurance I would have had my husband take me to Hospital. Instead I toughed it out and used my emergency supply of pyriduim but that did not even help this time. So I made my mind up that I would get to the bottom of this pain once and for all I HAD HAD IT !! I was sick of being sick. I went to 3 more doctors in a week and 1/2 and non of them could find anything fianally I went to a 4th doctor and she was another urologist in Seattle Virginia Mason Hospital, but she was not like all the others I had seen over the last 28 yrs . She really took her time and took all my history and asked so many questions and finally she examined me and told me I have IC and told me it was a uncureable diesese and that scared the heck out of me but she told me that alot of it had to do with diet and I would get to feeling better, maybe not all the way back to my old self but I would be better than what I was. I was so happy she knew what I was discribing to her all my symptoms as she asked questions and I was excited because she was asking me stuff that I thought hey she knows what I have been feeling like and where I was having pain and that it was real and not in my head. So I started to cry of course because that is what I do when I am happy and I gave her the BIGGEST HUG because for once I felt someone GOT IT ! So she put me on elmiron 3 x a day, and oxybutynin 3 times a day and , lidocaine when needed for pain down there, and also estrace hormone because I was so low on estrogen. She also told me about your web site and told me to go on line and read everything I could read and she hooked me up with a support group that meets once a month so I will start that next month. I got on line and found several good books I ordered to help me understand this IC even better. I have totally changed my diet, I thought all these years I was a pretty healthy eater but I have found out that I was eating so much fast food and out of the box food that is laced in chemicals. Now I am just starting my second week on the IC diet of just the stuff that definitely will not upset your bladder, I don't want to add any thing that might cause a flare yet. I have been feeling alittle better and atleast I am off the couch. I still get really tired and have that stabbing pain constant on my lower left side and the constant peeing even 2 times a nite and my urethera has small flares even on the very strictest diet but I am not going to add anything that might make it worse. I will experiment in a few weeks to see what makes me flare and what doesn't. I do have a question what type of vitamins can we take I went to the health food store today and ended up not getting any vitamins because I wanted a multipal and there are non without vitamin B and C does anyone have any brand name that they use that does not cause flares? Well thank you for letting me join in on your website. I hope some of you other girls were diagnosed sooner than I was that is crazy to suffer all those years and all the differnt doctors that do not even no about IC. It is just so unfair, they make you feel like you are crazy. Well I am glad I now have others I can talk to and they can relate. Please excuse my spelling.
    Thanks for letting me tell my long wind bag story.
    God Bless you all
    Connie

  • #2
    Connie,
    Welcome! Yes, diet really helps most with IC. I'm sorry that you had such a difficult time getting a diagnosis. Truth be told, I lived in Puget Sound when I experience my first flare up of IC neary four years ago and the two urologists that I saw there were absolutely rude and useless. I'm really glad you finally found a good uro! I had to move east to find a good uro who confirmed that I indeed had IC.

    I would avoid the vitamins at least until you get your diet settled. Most vitamins cause flares for IC folks.

    This site is a fabulous resource and really saved my life.

    Take care.
    mom_in_ma

    Comment


    • #3
      Connie
      I am so glad you found us...You will find all kinds of helpful on here that you can do to improve your IC...
      If you need anything just let us know....
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN 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


      • #4
        Hello Robin,
        Thank you for getting back to me. I will stay off the vitamins for now as you said I am trying now to get adjusted to the new way of eating. I am just happy that I know what I have now and that I am off the couch I was planted there in pain for the last month but I am really watching it and taking care to rest and not eat anything wrong and being sure to take my medicine and to read everything I can to learn about this IC. Well you take care and have a nice nite
        God Bless you
        connie

        Comment


        • #5
          Hello Ronda,
          Thank you for taking the time to write to me. I am sorry you have had so many problems too. Did you have to have a hysterectomy because of your endometriosis also? I no God had his hand in leading me to the urologist that would understand my problems. I was on my knee's praying to God when I was in such pain and crying and telling him it was so unfair for me to have so many bladder infections when some lucky people never even had one. I asked him to help me please find out what was wrong with me. It only took about a week for me to find the lady that has helped me an I thank God each nite for letting me feel as good as I do. Have a good nite
          Connie

          Comment


          • #6
            Hey There..

            No I didnt have a hysto..I have controlled the Endo pain by taking birthcontrol.
            But I do have IC pain.. If you keep reading here on this site you will find so many ways to help with your IC pain.. This site help me learn what to do to control pain.. My dr seems to not care..
            Let me know if you need anything
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN 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


            • #7
              Hello sorry to hear about your doctor

              Hello I am sorry to hear about your doctor. If I were you I would find a new one that is more caring. I no after I went to my last doctor I felt so relieved because I could tell she really cared and asked so many questions and she asked if she could keep my list of symptoms I brought, I was crying before I left her office and she even got teary eyed and gave me a hug and told me not to worry we would get me feeling better. I wish I would not have had to have a hysterectomy because I never got to have children but I guess God did not want me to for some reason, I just have to accept it. Well you take care and I will keep looking at all the email posts on this web site. It gives me alot of info and hope
              Connie

              Comment


              • #8
                Somehow, it becomes easier to deal with a disease once you know what it is you are dealing with. I'm glad you found the IC Network.

                Warm welcoming 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

                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


                • #9
                  Hi there and let me add my to the gang as well! I too am glad you found us as it's great place for all kinds of help, support, information etc!!!

                  Hope to see you around the boards!

                  Hugs,
                  Tracey
                  How do you eat an elephant? One bite at a time...

                  Harry arrived 2/23/09!



                  *IC 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.

                  IC Diet Cheat Sheet:
                  http://www.ic-network.com/diet/2009icdietlist.pdf



                  Dx's:
                  IC dx'd Nov 2004
                  Lymphocytic Colitis dx'd July 2005
                  Possible IBS
                  Current IC Meds
                  Vistaril 25mg in the evening
                  Previous IC Meds taken:
                  Cystoprotek - 2 caps 2x's a day
                  Elmiron, 100mg 3x's a day
                  Ditropan, 5 mg 3x's a day
                  Others:
                  Wellbutrin 150mg 2x's a day for Anxiety/IBS
                  Pepcid 40mg a day for GERD
                  Zytrec for Nasal Allergies
                  Align Probiotic daily for IBS

                  Comment


                  • #10
                    Hello Tracey,
                    Thank you for the warm welcome, I will keep reading this web site for sure and if I can help anyone out I will be sure to write. Have a great day!
                    Connie

                    Comment


                    • #11
                      Hello Donna,
                      Thank you for writing to me also , it is sure nice to here from others that have gone through what I have gone through. It just seems like doctors would be able to tell us earlier that we have IC and not keep us on antibiotics for years for what turns out was not even bladder infection after all. Take care and have a wonderful day!
                      Connie

                      Comment


                      • #12
                        I also have left lower pelvic pain ,I haven't been diagnosed yet but I will see my Dr in June, this Dr is my fifth one and I hope she can diagnose me soon. I feel very frustrated at the moment because I don't know what is happening to me. My gynecologist thinks I have IC but he doens't want to treat me for it without knowing for sure.Do you know what this lower pain could be??? please let me know if you can
                        :Loren

                        Current Meds
                        Elmiron 300mg tid
                        Elavil 25mg at hs
                        Atarax 50mg bid
                        Tramacet as needed
                        Vitamin D 2000 iu bid
                        Gabapentin 300mg tid
                        Uracyst instillatons one a month

                        Comment


                        • #13
                          Hello
                          I am not sure why alot of my stabbing pain in on the lower left side but my doctor thinks it is tyed into the IC along with all my other symptoms. I had gone to a hurnia doctor because I thought that might be it and he said I did have a soft area where a hurnia could start to come through but for me to watch it and not lift anything heavy and he also said he would operate if the pain got too bad. But my Urologist said she does not think a hernia she said she thinks it is the IC. I don't know why you have to wait so long to see a doctor, I was in such pain that I called and they said the appointment book was out a ways but I told them how much pain I was in and that I had already been waiting on my own and they made room for me to see the doctor 2 days later. I hope you don't have IC , but if you think you do I would not waste your time or money on any other kind of a doctor like MD. or a Gynocologist, I would go right to the Urologist otherwise they will make you feel like you are crazy because they will not find anything and it gets so frustrating. I wish you well
                          Bless you and your health
                          Connie

                          Comment

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