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  • #1

    Hi I am new to this site!!!

    Hi everyone,

    My name is Gloria and I am 27 years old. I was diagnosed with IC in 2003 at the age of 23. I have gone to multiple doctor's being misdiagnosed and had it for a year or more before finding the greatest doctor ever. I have had hydo-distention twice. The first time was when I was diagonsed with IC to find out what it was that I had. I went into remisson for about 4 years after having treatment in the office 3x weekly. But it has come back full blown as of April and I have been going for treatments again. I had the hydo-distention again 6/14/07. I am going to have more treatments this week. I am hoping that it will go into remisson again. I have been in so much pain The doctor said my bladder isn't as bad as the first time so that's good. Anyway I am just looking for support. Nobody would understand more then the people who have it. I am able to talk to my husband about things. But he doesn't understand what I am going through. He is pretty supportive so I am lucky though. So alittle bit about me and I am looking forward to join this site. I also looking forward to giving advice and getting advice LOL!!! Thank you all and this is an awesome site
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  • #2

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    • #3
      to the ICN!!! Alot of us have the same problem. It's nice to know that family or friends listen to your ic problems but they never get it. My bf in particular... he's numb to the fact that i'm always in pain. he used to help me and stay with me when i felt like i was dying. Now he does whatever he wants, goes out leaves me alone to clean his truck or car. Whatever he does. It's nice to know that people here do understand and can give you the support and words to help you get through the day. I hope you feel better soon... sending you hugs

      Rachel
      ***Rachel***

      Dance like no one is watching
      Love like you've never been hurt
      Live today like it's your last

      Dxd with IC in June '06

      Comment

      • #4
        Hello and
        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.

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        • #5
          I hope you will go into another remission very soon. I also had a hydro on the 14th and am hoping this one will last at least a year.

          Sending gentle 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

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          • #6
            Originally posted by meme View Post
            Thank you Leah

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            • #7
              Originally posted by petrie86 View Post
              to the ICN!!! Alot of us have the same problem. It's nice to know that family or friends listen to your ic problems but they never get it. My bf in particular... he's numb to the fact that i'm always in pain. he used to help me and stay with me when i felt like i was dying. Now he does whatever he wants, goes out leaves me alone to clean his truck or car. Whatever he does. It's nice to know that people here do understand and can give you the support and words to help you get through the day. I hope you feel better soon... sending you hugs

              Rachel

              Rachel thanks for you reply I def know how you feel. My husband is the same way. It's like I have had it for so long I should know what to do when I am in a flare. I am always telling him and it is like I am faking it I just wish this would all go away. I miss the things I used to eat,drink and do. I have been losing weight cause it just makes me so depressed sometimes. I really wish none of us had to deal with it.

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              • #8
                Originally posted by leelee88 View Post
                Hello and
                Thank you!!!

                Comment

                • #9
                  Originally posted by ICNDonna View Post
                  I hope you will go into another remission very soon. I also had a hydro on the 14th and am hoping this one will last at least a year.

                  Sending gentle hugs,
                  Donna
                  Thank you I hope so too. Hydro is not fun I don't like going under at all. Good luck to you as well I hope it works you also.

                  Comment

                  • #10
                    Hi Gloria,

                    WELCOME!! These boards are a godsend!

                    I am also a New Jerseyan and have, what I think, is the best doc of all time ....FYI There are 2 support groups in NJ - one in Englewood, NJ and one in New Brunswick, NJ run out of area hospitals with some great, supportive people AND doctors!

                    Hoping you find what you need here,
                    BETH
                    IC diagnosis 1999
                    Meds: Elmiron
                    hydroxyzine hcl
                    DMSO as needed
                    valium as needed
                    librax 3x day

                    TENS therapy



                    Thanks to all on the boards - YOU have helped more than I can say!


                    A person's true wealth is the good he or she does in the world.

                    Comment

                    • #11
                      Howdy and welcome!
                      Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                      I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                      Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                      I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

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                      • #12
                        Originally posted by Bethrlk View Post
                        Hi Gloria,

                        WELCOME!! These boards are a godsend!

                        I am also a New Jerseyan and have, what I think, is the best doc of all time ....FYI There are 2 support groups in NJ - one in Englewood, NJ and one in New Brunswick, NJ run out of area hospitals with some great, supportive people AND doctors!

                        Hoping you find what you need here,
                        BETH
                        Hi Beth,

                        That is really good to know there are support groups. I mean this site right here is a godsend like you said. I live in central Jersey so I think the ones you had mentioned are in North Jersey. I am hoping to find one around my area. If it isn't too far away I think like 45 minutes I will def check it out. Thank you so much for the tip I greatly appreciate it

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                        • #13
                          Originally posted by kuntrygurl78 View Post
                          Howdy and welcome!
                          Thank you!!!

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