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  • #1

    New Girl...

    Hi everyone...
    I have been perusing this site on and off for the last two or three months. I have found everyone on here so amazingly supportive, so i have decided to put up my first post.
    I have recently been diagnosed with IC, however I am not currently having all of the symptoms you often see posted on here, and I am very scared and nervous. I am now scared that my symptoms will get much worse.
    My doctor diagnosed me after 6 months of burning in my urethra, which I thought originally was a UTI, that would not heal with treatment. I have been to so many doctors, walk in clinics and specialists, I thought I was going crazy. Following my cystoscope, my urologist suggested IC. Currently I am taking antibiotics for some inflammation that he found during the scope. I was also instructed to take part in the IC diet.
    Currently im very emotional and scared. Many women and men have dealt with IC, and I find you all so courageous and strong. I am hoping to make some friendships which will help me deal with my diagnosis, and so that i can support every one on here as we deal daily with our conditions.
    Al though a lot of posts on this board scare me, i know it will help me too.
    Thanks everyone for posting!


    "Its a troublesome world all the people who're in it
    Are troubled with troubles, almost every minute
    Just tell yourself Duckie, you're really quite lucky
    Some people are much more, oh muchly much more
    unlucky than you!" Dr. Seuss



    Tags: None
  • #2
    Jube to the ICN. You will find a ton of encouragement and support here. We're all here for you as you go through this journey. The IC Diet is very helpful to a lot of IC Patients. Not every thing that gets posted on will mean that it will happen to you. Most of us are very individual with respect to what is going on with IC. We are all at different stages. I hope you find what you need here.



    Have a Wonderful Day! We look foward to your future posts and will try to assist you in any way we can.

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

    Comment

    • #3
      Hello and .. Glad you found us
      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
        HI JubeJube!! Welcome!! Glad you are here too! That's good that you don't have all the symptoms! Maybe you won't get them so stop worrying.....stress makes them worse! lol
        There's lots of great meds now for IC and supplements that help with the pain, just incase you get more pain.
        Staying away from the trigger foods using the IC diet really helps too. I'm available most of the time for PM messages if you feel alone in this persuit! Roxie
        I wish you lots of luck.........Take care......Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment

        • #5
          I am also somewhat new. I was told that I probably have IC in March. I have been taking Elmiron and will stop in a week because me and my husband are going to try to start having a baby! Feel free to ask me any questions. I am not for sure if I can answer them, but I will do my best. It does get better. I am just waiting for the day when my gyno will figure out my yeast problems!! Good luck and welcome.
          Diagnosed with IC - March 2007
          Diagnosed with vulvodynia - June 2007
          -Lots of prayer
          -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
          -Taking Prelief as needed (stopped because of pregnancy)
          -IC diet

          Comment

          • #6
            welcome!

            hi there jube,
            WELCOME to icn. these wonderful women have helped me out more than they know and i want to give everyone here a HUUUUUUUUGE hug! i know you'll find the same.

            good luck to you!

            tracy
            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

            I'd like to be on House, MD as a medical mystery.

            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

            Connor & Mommy by the tree:


            Connor with Santa...so happy!


            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

            Comment

            • #7
              "Never Give Up."

              To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

              My Photobucket Link:
              http://s237.photobucket.com/albums/f...ramack_photos/

              Comment

              • #8
                Jube,
                I'm glad you found these boards so soon, it took me about 13 years to find out about it! I really wish I knew about it sooner. I'm sorry that you've been diagnosed with this, and yes as much as the boards are extremely helpful, it can also be overwhelming and frightening at first also. But try not to worry about that and just take it one day at a time. You will most likely in time start to have lots and lots of questions and these boards are the best places to get the answers because everyone else is in the same boat and has either been through or is going through whatever you are at the time. So it's really nice to be able to share with people who really understand. But don't get too consumed with it and take it slow because it can be alittle scary to. I wish you the best of luck and try to find whatever works best for you, the diet is probably the most important thing to start right away, and then take it from there.

                Best wishes,
                Kari
                Kari

                I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                Comment

                • #9
                  Hi Jube. It's very nice to meet you. I was diagnosed in March following what I thought was a UTI that would not go away. My symptoms have gotten better since I was diagnosed so please don't assume that your symptoms will get worse. Hopefully, with treatmeant, they will get better! Like Kari said, I find it best to just take one day at a time. I visit these boards almost every day so that I can educate myself on what treatments are working for others and so that I feel less alone in all of this. You are so right about the women and men on these boards - they are so thoughtful and kind. I often wonder to myself if kindness is one of the symptoms of IC I am keeping you in my thoughts and hoping that you will be feeling better soon...linda
                  lan
                  lan
                  ICN Member
                  Find all posts
                  View Profile
                  Last edited by lan; 06-12-2007, 02:25 PM.
                  Sudden onset of UTI like symtoms on Dec 27, 2006.
                  Diagnosed with IC on March 12, 2007.
                  Current Meds: 50mg Elavil
                  "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                  Comment

                  • #10

                    Dont let any posts on here scare you. Like mentioned, its all individual-what one person experiences might never pertain to you.
                    You'll gain tons of knowledge that will be beneficial to you--we promise!

                    See ya around the boards..

                    Diana
                    (\__/)
                    (o.O )
                    (> < ) This is Bunny. He's on his way to world domination.

                    Comment

                    • #11
                      I'm so happy that you found us. As many of the other ladies here will say, I don't know what I would do without this website and the support of everyone here. I have a very loving husband and family but no one really understands what we are going through except for the rest of us that have IC.

                      I have made some great friends here as many people have, you will find there is always someone to lift your spirits when you're having a hard day. Don't worry though about your symptoms getting worse, from what I have read MOST people do not get worse once they are diagnoised. I still feel pretty crappy some days but I don't think I'm any worse than I was in the beginning.

                      I am on the boards alot as many of us are (I sneak on at work when I'm bored because we're slow, lol ) and just like Roxie, or probably most of us you can PM me anytime if you need to talk.
                      Christine



                      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                      I have tried every oral medication as well as rescue instills and DMSO.

                      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                      Also proud mom to the best Bullmastiff on earth, Claus

                      Comment

                      • #12
                        I'd just like to add another to the IC Network family.

                        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

                        • #13
                          Adding my welcome and support too! Feel free to PM me anytime. I was diagnosed on January 7th 2007 a day I wll never forget. These boards have been a life saver, wealth of information and has many new friends for all!

                          Hang in there!

                          Jilly


                          Comment

                          • #14
                            Hello, Jube To the ICN Family. I sorry to hear you have IC but I'm glad you found us. This is a very informative website. Everyone here is very friendly and supportive. We all know what you are going through. I hope you find a treatment plan that works for you.

                            Take Care
                            TexasHoney

                            Let's keep praying for a cure.
                            IC Symptoms began in early 2001
                            Divorced : Sept 2002 (Partly due to IC)
                            Diagnosed with IC in April 2004
                            Most recent injury - Rupurtured Left Achilles Tendon
                            Wed Jan 28 2009                             (Ice Storm Accident)
                            2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                            Other Injuries
                            Broken Left Ankle - July 2004 ( fell off ladder)
                            Broken Left Ankle (Again) - May 2005 (car accident)
                            Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                            CURRENT MEDS
                            Elmiron, Pyridium

                            Comment

                            • #15
                              Hi -- I would like to give you another Texas
                              Glad you found us. Like the others have said, don't let any of this scare you as we are each individuals and we are in different degrees of this illness.

                              I am on the boards on and off all day long like many here, as sometimes work is very slow or heaven forbids I get bored out of my mind!! So I try to help out here as much as I can. Post when you can. Again, Welcome.

                              Comment

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