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  • hello

    hi my name is jody i was diagnosed with IC in june of 06 the doc i was seeing didnt give me much info, so now i am looking for a new doctor i relocated to Las Vegas NV, i am havind a really bad flare right now and ended up in the E.R. yesterday, the doc there was wonderful he told me about you guys i had no idea there was so much support out here i have felt so alone in this whole thing but now i feel like maybe there is hope to manage this awful condition, does anyone have any ideas about how to get your spouse to understand what is happening and the amount of pain that comes along with all of this?

  • #2
    Hi Jody! Just wanted to say "Hi" . I am sorry you are feeling so bad. I usually get really nice drs at the ER. Check out web site there is a lot of great info.
    mom to 3 wonderful kids

    IC symptoms 7/03,
    hysterectomy 11/04,
    prolapse cervix 7/07
    diagnosed: IC 2007
    IBS 2008


    • #3
      I'm glad you found us! It sounds like you need a different doctor, maybe, who will listen to you and work with you on finding the right combination of treatments to help you.

      The Intersticial Cystitis Association (different website) has a booklet called "Because You Care," that is for partners of people with IC. We have just heard recently that the ICN shop (link at the top of this page) will soon have a new book available on this very topic -- helping spouses understand. And if you read down the Forums, you'll find some discussion on the subject, under "Talking with Partners" (or something like that). So you've actually arrived at a very good time, for that particular question.

      We all know -- at least, those of us in intimate relationships know -- how hard IC and chronic pain can be on the partner, and on the relationship itself. Please feel free to post any specific questions you may have (someone may have a good insight) or to jump in to any ongoing discussion. You are one of us, and you are very welcome here. Don't be shy.

      Good luck to you, I hope this helps. Stay with us, a good support group is a great help in coping with this rotten condition!
      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
      Wishing you happiness and good health, and all the best out of life.

      Peace, Carolyn

      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

      On the Beach with IC


      • #4
        HI! Welcome!
        I too am glad you found us! There's lots of info at your finger tips on this's great!
        Sorry to hear your husband isn't very supportive.....been there done that with my first husband (part of the reason why he's my ex husband! LOL) Maybe it would help if you had him read some of the posts here......there's a section for husband and family members to post questions or vent frustation.
        How's your flare? I hope you are feeling better since going to the ER. Are you following the IC diet? It's VERY important to follow it and find what foods, chemicals etc...cause the flares. What meds are you on now? I hope you find a new IC dr. soon and he's got a great bedside manner.
        Take care.......feel free to PM with questions......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's amazing stuff!!:woohoo:


        • #5
          Jody and to the IC Network. I'm so happy to hear that you got some help at the ER. From what a lot of other members have said ER dr's are not always very knowledgable about IC. It's also great that he told about this great site here. I found it as soon as my gyn suggested that I might have IC when I went home and did a search for it on the web. I am so happy that I did, there are a lot of very supportive friends here who are always ready to give suggestions or just hugs when you're having a bad day. If your husband doesn't understand maybe it's because you haven't fully explained to him about IC? I have talked to my hubby about my bladder until he's ears have fallen off, lol, so he knows a lot about it now. There is so much info in the patient handbook maybe it would be helpful for you to print some of that out for him to read or just fully explain to him what it is like. It can be very hard for our spouses to have to deal with this chronic pain and health problems. You will find lots of info here and hopefully you can find a great dr and start to feel better soon. When I needed to look for an uro who knew about IC (my gyn was the one to first diagnois me) I looked up all of the uro's that accepted my insurance and then I started calling them and asking their scheduling people if any of their uros had a lot of IC patients. One practice told me, yes we have a dr that has a lot of IC patients and she set up an appt for me right then and there, he does seem to know alot about it and has been great so far. Good luck to you and we're all here if you need us

          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


          • #6
            Welcome to the ICN. I have been to most of the ERs in Las Vegas, since my soon to be ex in laws live there. I have to say the urgent cares and ERs are the most understanding I have encountered since dx. If you would like some names of uros and the like, please PM me. Once again, welcome to our bladder neck of the woods.

            (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

            [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
            :angel: IC Angel Volunteer Coordinator :angel:
            :) Contact me via PM or e-mail if you would like to help
            I have learned all about life in 3 words: It goes on! :D--Robert Frost
            PCOS 7/85
            RSD 7/94 :headbang:
            Endometriosis 9/98 :toilet:
            Antiphospholipid antibody syndrome 9/99
            Kidney stones--too many to count
            Factor V Leiden mutation 10/02
            IC 6/03 :evilsmile
            Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
            "Spirit is an invisible force made visible in all of life"--Maya Angelou
            "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


            • #7
              thank you!!!!

              thank you so very much for all the info and for making me feel so welcome.
              my current meds are
              elmiron 100mg 3x day
              oxbutynin 5mg 3x day
              esteradiol 2mg 1x day(hormone replacement)
              hydrocodone 10.5mg for pain only got these yesterday at the E.R. my other doctor was giving me tramodol but stopped filling it said i needed to try some advil or tylenol
              the E.R. doctor i saw was a pian managment doctor and was very helpful he reffered me to a uro hope they are good. my husband is trying to be supportive i think he relized yesterday just how bad this can be and is wanting to learn more so that he can help me more. anyways thank you all so much.


              • #8
                Hi Jody, and Welcome! I see people have already let you now about the book that will be available soon, but I just wanted to say hello and let you know that I do understand how hard IC can be on relationships. My husband and I have been through alot but we are getting so much stronger because of my journey with IC. I hope you are able to find a good doctor soon. Please stick around here! This has been such a wonderful place for me to find support and become a stronger person!
                Best wishes!
                IC; PFD; possible Fibromyalgia; IBS;

                Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                I've Tried:
                three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                Currently using:
                Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


                • #9
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation:

                  Institute of Female Pelvic Medicine (J. Dell, My MD)
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas


                  • #10
                    Wow, I am so happy you had a good experience at the ER, it is a rareity to get a good doc who has alot of knowledge especially when it comes to IC. Most ER docs will look at you like your nuts. I am glad you found this site, it has been a God send for me. There are so many wonderful people on here.


                    • #11
                      I don't have much to add, but did want to say to the IC Network. And I encourage you to read the information in the Patient Handbook.

                      Warm welcoming hugs,
                      Stay safe

                      Elmiron Eye Disease Information Center -
                      Elmiron Eye Disease Fact Sheet (Downloadable) -

                      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:


                      Diet list:

                      AUA Guidelines:

                      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.

                      Anyone who says something is foolproof hasn't met a determined fool


                      • #12
                        Hi and
                        Glad you got a good and understanding doc at the ER for this, as most of us who goes don't - at least that has been my experience... (but my former doctor told me if I went to the hospital that he was associated with I would of had a good experience! Oh well. Glad you are getting the help and medication you are needing. Take care.


                        • #13

                          wanted to welcome you! i'm also new on here & everyone is very helpful & suportive!! i hope the best for you & your husbend. it's hard for people to grasp that doesnt have it.know that your not alone & hope you find a good doc. take care.