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I am SHOCKED! Wish me Luck!

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  • #16
    Oh Kara! I dont blame you for being scared. Who wouldn't? You will be in my thoughts and prayers.

    Meds I take:
    Elmiron, Elavil, Vagifem- for IC
    Albuterol, Flovent, Atrovent- for Asthma and lung problems
    Paxil, Clonazepam- for depression and Anxiety
    Atenolol- for rapid heart rate
    Nexium- for Gerd
    Levothyroxin- for Hypothyroidism
    Lasix, Pottasium- for edema
    Lipitor- for High Cholesterol
    I coated aspirin
    02 at bedtime


    • #17

      Thinking of you and praying for you every step of the way!



      • #18
        Ooooh, just thinking about your test scares ME, & I'm not the one going for it!!! GOOD LUCK, you can do this. I've been reading your bladder removal stories That's all I can say is WOW.

        BIIIIIIIIIIG hugs.

        (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 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!


        • #19
          Kara...You know my thoughts are with you and I am praying that this will finially be an answer for you.

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.

          Link to the ICN Patient Handbook:

          Link to the IC Diet:

          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.


          • #20
            Hi Kara,
            I have had the urethral EMG test myself, albeit for different reasons. I remember how scared I was before it, but to be honest the thought of what is being done is worse than the actual sensation.
            OK i won't pretend that it doesn't hurt, but it is transient, and if it can help you get a diagnosis at last, then it will be worth it.
            Feel free to PM me if you want more information.
            From what I have read of your situation you sound like an amazingly strong woman, and if I can get through this test, you definitely can!!


            • #21

              The test sounds horrific!! I hope that it goes by very fast for you and finally delivers the answers you have sought for so long. I hate that they cant do it under some sort of anesthesia, but it makes sense. But, I know you will get thru it somehow, just like you have gotten thru everything else.



              • #22
                Kara: My thoughts are with you. You are a VERY STRONG WOMAN, remember that!!


                • #23
                  Dear, Dear Kara,

                  You have gone through a life time's worth of pain and frightening experiences with IC! I am so very sorry you must go through this. I pray that you will be protected somehow from this pain, somehow. I know miracles can happen. I know that we all are praying and hoping one for you.
                  I hope this pain and the procedure will one day, just be a chapter in your brave life's book of hope and healing. And the rest of your life's book will be of better days, many better days. You need to heal, girl. I know you are so loved and it is obvious we just pray the test will be quicker than you can imagine and the answer will be a teatment that can be handled with less pain.
                  I admire you and keep you in my heart and hope that you will be healed. I am bad to ask, "why?" but we do not have these answers.
                  Please know that many, many people are pulling for you to get well, and get through this hard time.

                  Bless your heart,


                  • #24

                    *Diagnosed with severe IC in 2004
                    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                    **I am not a medical authority nor do I offer definitive medical advice. 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.


                    • #25
                      Jen, (I like the group hug!)
                      A question: has UNC- TV done anything on IC? I was also thinking of a magazine called Metro magazine...(it is Raleigh- Durham- Chapel Hill based..I think, but maybe an interview with someone who has suffered and been through many treatments could make an impact. Are you willing to be interviewed?I was just wondering, in case someone affiliated with either of these two places would want to do a story. Do you know off hand about how many people are [I]diagnosed with IC now? I know that the numbers have changed in the last 10 years. It just seems that this is an under-reported illness and yet, it has actually been accepted by the old cranky UROs of the past, are admitting it is real. The first 4-5 uros I saw were of the old school, not believing it to be an illness. Thank God for Greensboro's Urologist who has brought light even to this area of NC.


                      • #26
                        I've had an EMG done on my legs and arms, and it was very painful too. I really think that there should be no problem with something like valium that would just calm you down, but not change the outcome of the test. You would still be awake and alert.

                        I think you're very brave to have this done. I know it's been a long road for you and I hope some answers come of it.

                        Let us know how things go.

                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                        • #27
                          I hope this is a miracle for you. You are strong you know. God doesn't give us more than we can handle, although I must he thinks your super woman! You have been through so much already, lets hope this gets you straighted out.

                          IC diagnosed officially via cysto/urodynamics 1/26/07

                          Grade II Endometriosis diagnosed via lap 12/11/07

                          "Fall down seven times, Stand up eight."

                          "Life is a tragedy for those who feel and a comedy for those who think."

                          Current Treatments:
                          Interstim Since 5/25/07!
                          Birth Control


                          • #28
                            You are so strong, stronger than almost anyone i know. I know you can get through this. Please tell me they are going to give you pain medicine for afterwards!! I am sending the biggest hugs your way. I dont blame you one little bit for being scared, I think that is normal. Try to picture a beautiful beach and the calm ocean while they are doing it. Lets just hope this is going to be the answer you seek.
                            Love Sarah
                            Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!


                            • #29
                              Thank You!

                              Thank you everyone! You are all so sweet, kind, and thoughtful. We leave on Monday. I think that I will be so comforted to think of what you all wrote. I will think of the beach that I will be able to go to some day when I get better. Great Ideas. I cherish all of you and so glad to know you!

                              Love and Hugs!

                              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:

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


                              • #30
                                Kara, I'm so glad you got the courage award, because I think you have more courage than any other person I have ever met in my life! You deserve this award.

                                I am praying you will have a pain free life soon.