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  • a long road

    Hello Everyone

    Well, I have had IC for a year and a half and I can't believe this is the first time I am writing here. I have read many of your messages and want to thank everyone who works to make this such an informative and supportive place to turn to. I think I am finally posting this message because I realize that I do have IC and will probably have it for the rest of my life. I was in denial for a very long time.
    Well, I'd like to share my story and would love some advice and guidance from some you. I am 27 years old and first began symtoms about three years ago. Just bladder infections. Then, in June of 2002 it all began. Three weeks before my wedding this nightmare began. My symptoms did not start out slow or gradual, they cmae on pretty strong from the beginning. I went through the same run around most of you went through. From being told I was just a nervous bride to being brushed a side by doctors. I have been on many oral meds including elmiron, hydroxine, ditropan, elavil, etc. None of them worked. I live in NY and even went to see Dr. Moldwin. I was sent to Physical therapy for pelvic floor problems but nothing was helping. My symptoms were very bad pain in my lower abdomen- right in my bladder and some frequency. The pain is what I need help with. Anyway, as nothing was working a little miracle happened in my lofe. I got pregnant!!! It was not planned but it was the best thing that could have happened at that time. My symptoms improved greatly during my pregnancy. The pain had decresed tremendously and I could expand my diet too. I had a good pregnancy and had a c section. My baby boy was born in Jan. and I was doing well for about a month after. Then, it all came back. It's like I was almost afraid to tell people I was doing OK in fear of jinxing myself. And I did. Sooooo, now I am seeking treatment again. I honestly feel that my pain is either in the bladder or from nerves in or around it. I am thinking about installations or the hydro - both of which I have not tried before. I am getting really scared and desparate. It was different before. I could go to work and come home and lay down. Now, I have to take care of a little baby and I want so bad to be a good mom. It's so hard getting up in the middle of the night and being in such awful pain. I am really scared and I am determined to get this under control. Please, if you have any advice please respond. Thanks to you if you are still reading this long message!!!


  • #2

    Welcome to the ICN. Glad you found us but sorry for the reason. You said that you had been reading these posts for a while so you already know that there are a lot of very caring and supportive people here.

    My symptoms, like yours, came on all of a sudden. One day, I was fine, the next, extreme pain. I was dx'd in August 2001 by a cysto/hydro. That was some of the worst news I had ever heard. It took me a while but, I finally found a treatment that works for me, Elavil, an occasional Prelief and watching what I eat. Now, I can say that I live a normal life with mild IC symptoms. Some days, I am even able to forget that I have IC.

    Welcoming gentle and warm hugs...

    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.


    • #3
      Hi Jaxie,

      I'm sorry to hear that your symptoms have returned. Did any of the treatments you mentioned work before, or did you just get relief during your pregnancy? I'm asking because some medications take a while to really kick in and provide relief. I responded very well to Elmiron, but it took quite a few months. I'm so glad I hung in there though!! It literally gave me my life back. Also, have you been following the IC diet? There's lots of info on IC treatments in the ICN Patient might be helpful to look through it.

      Does your current urologist have any suggestions?

      Take care,
      My story of healing and hope


      • #4
        Welcome to the IC Network. You'll find a wealth of information and support here.

        Have you seen your urologist since your symptoms returned? If not, I think that is a very important step. Dr. Moldwin is a well known IC specialist and his book is one of the best I have seen about IC.

        Have you found the Patient Handbook on this site? It's at and contains some really good explanations of procedures and treatments.

        You'll want to put yourself on an IC diet --- information is in the Handbook.

        I hope you get some relief soon.

        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


        • #5
          welcome to the icn. i'm sorry your systom came back but very glad you had a healthy little angel angel i do the dmso at home and they seem to help me alot. but as you most likely have read everyone is diff. and there is alot of diff treatments out there i hope you find one that will help you soon in the mean time if your not brest feeding ask for some mild pain medicine so it dont knock you out. use your heating pad for your pain or maybe ice which ever helps you the most. that is the only thing i know to tell you to try right now.
          please go back to your doctor and let them help you that will be the best treatment of all.
          have you been checked for another uti? that could be the problem that is causing your systom to come back also. I wish you luck happiness prayers and much love.
          Oh if you would like to talk please pm me i would be happy to try to help you as much as i can hugs to you. grouphug
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.

          I have IC, but IC doesn't have me anymore!


          • #6
            WELCOME TO THE ICN!!!!
            I have one question how long did you give elmiron to often takes 9 months sometimes more. Anyway my other advise would be the IC diet, calcium...(and for me especially between meals since stomach acid has been my biggest enemy)
            Be careful not to hold it...and keep trying the other treatments....hopefully something will help you.

            Faith, Hope, and Love,

            I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

            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.
            or find me on facebook
            Be the Miracle! & Pay it Forward!

            [email protected] please contact me...I am here to help!


            • #7
              I have been on Elmiron for 4 months and so far it hasn't worked. Is there a chance it will still work- I have no plans to stop.
              I read the sucess stories and most people were able to take Elavil or some other anti depressent to break the pain. For some reason I get horrible reactions to all antidepressents including Elavil- I get anxious and jittery- loose my appetite and can't eat. I am having continual pain. I have tried DSMO and am now on Neurontin (sp?)- Nothing helps except Oxycontin lowers the pain. Any suggestions- Do I still have some hope with the Elmiron- I am so tired of hurting. Betsy


              • #8
                Keep going with the Elmiron. It could take as long as six to seven months before you would see relief.


                • #9
                  And some people say it was't until the 12 month mark that it kicked in.... Hang in there awhile longer.

                  Jaxie!!! Glad to have you posting, but so sorry to hear your symptoms are back...

                  Diagnosed August 2001

                  Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                  Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                  I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                  “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                  “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                  • #10
                    Glad you are posting here!

                    I am sorry you are in such pain again! Do rule out a uti quickly. There is such a wealth of information here, that it can be overwhelming. But, it is well worth looking at as something suggested will very likely help you too. The diet is a great place to start, since that is something you can control and usually gives relief fairly quickly.

                    If I read your post correctly, you have been in pain for more than 6 months. Since you have read the boards for a while, hopefully, you have some ideas of what works for different folks. You might start by trying out some of the ideas that don't require a doctor to try. Like using hot/cold to relieve pain. But, at the same time, make plans to see a doctor for help and a urologist is probably the best starting point.

                    I am in awe of folks like you who have children and have to find the energy to tend to them, while trying to take care of themselves. I am sure you are a fine mom, but fears are normal in first time parenthood. I hope your hubby can be enlisted to give you extra help till you get some relief from the pain.

                    Glad to see you posting here! I hope you find a help soon and begin to feel better!