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I've had IC all my life but just diagnosed 2 yrs ago, but don't know much

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  • I've had IC all my life but just diagnosed 2 yrs ago, but don't know much

    I've delt with the problem of having to go pee every 10 min, had to push out pee due to fluid rentention, I've had this all my life and now I'm 20 and found out I had IC 2 yrs ago, after yrs and yrs, of going from different Overactive bladder meds, which did nothing but make it worse, the doctors all believed it was pychological, due to my age. I went though hell all 12 yrs of school, I've cryed on my knees telling a teacher in the 4th grade, I had to pee, but she didn't believe me, so I ran out after doing that. (well the last 2 yrs wasn't too bad, as I went to a different district than the earlier yrs)(the teachers, let me go when I needed to which helped out a lot!) but it still was hell for me, I love sports, but could never join school sports, due to worring about having to go to the BR. It wasn't till, I went to a decent Uroligist and years of different unsesseful treatments, that I finally got an answer to what this was. But by that time I found out, it was the last month of having insurance, so I never got to get treatment for it. I was on imiprimine for 3 yrs, but stopped it, due to, to high of dose, which made me a zombie.

    What else other than tri depressants, help? I took a AZO for today, due to a flare up.

  • #2
    Sorry you suffered for so long with no one to believe you and without answers. You have come to a wonderful place for support, encouragement and information.

    This is a link to an older post made by the ICN's founder. It has a lot of good information about what you can do to help your IC:

    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


    • #3
      I'm sorry you went through all of that. It must have been so awful! Many IC'ers do find that the tricyclic antidepressants help them with pain, but there are other medications/procedures to try. I know you will learn all about them as you navigate this site - there's a ton of great info here!

      Welcome, and I hope you will be feeling better soon, now that you have a proper diagnosis! The worst time is always before that diagnosis, so I believe you have already seen the worst of this - now you will be on the road to getting better!



      • #4
        I'd like to add my as well!! You certainly have been through a lot, gosh!

        I'm with Kim, I really think you should check out the Patient Handbook - it's an essential guide for help in dealing with IC!

        I highly suggest starting the IC Diet as well, it's a great symptom management tool that's easily accessable to anyone. You still have to eat right? I know it helped me out greatly, and it's helped many ICers manage symptoms. In the Handbook is the IC Diet Food list, and it's been so much help to me! Here's a link to the page:

        Once again - welcome to the gang!! We are glad you found us, like Kim said, it's a wealth of information & support. I had learned more here from this group of great people when I first came here than I did from my doctor!
        How do you eat an elephant? One bite at a time...

        Harry arrived 2/23/09!

        *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.

        IC Diet Cheat Sheet:

        IC dx'd Nov 2004
        Lymphocytic Colitis dx'd July 2005
        Possible IBS
        Current IC Meds
        Vistaril 25mg in the evening
        Previous IC Meds taken:
        Cystoprotek - 2 caps 2x's a day
        Elmiron, 100mg 3x's a day
        Ditropan, 5 mg 3x's a day
        Wellbutrin 150mg 2x's a day for Anxiety/IBS
        Pepcid 40mg a day for GERD
        Zytrec for Nasal Allergies
        Align Probiotic daily for IBS


        • #5
          i like to add my as well.
          You sure have been though a lot for your age. I agree with the others, go to the handbook, try the diet. Its a lifesaver. Good luck.


          • #6
            Just want to add another
            Miss Bessie

            Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

            Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

            Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


            • #7
              Here's another coming your way.

              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.


              • #8

                I was going to suggest the handbook, but Kim already did It really is a great resource. You will learn about the many, many different types of treatments for IC there.

                *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.


                • #9
                  Thanks everyone!

                  I've looked at the diet, and gotta say, some will be quite hard, like with soda, I LOVE SODA! expecly sadly Dr. Pepper (has caffiene in it) I love hot dogs too, but I am glad shrimp is ok, thats one of my fav. foods. How should I do this diet? I know, caffiene does make me go a lot more often!

                  Sorry for the delay in responding from me, was a little busy earlier this week.

                  Is there any connection of constant stomach aches, and IC? All my life I've had that. for a good 4 years I slept next to a little garbage pale, due to stomach aches.


                  • #10
                    There are a lot of people who have digestion and bowel problems along with IC, though the exact relation isn't known.
                    As far as the diet, it seems pretty overwhelming at first, but it's worth it. You may find that you don't have a lot of food triggers - for me, the big no no's are excess soy products, and any artificial coloring, preservatives, or sweeteners. You may not have to give up the things you love forever, also, even if they make you flare now. If you let your bladder heal, you may regain control over what bothers you. The thing is, you have to be dedicated to the diet at first and not cheat, which is hard, believe me. The food restrictions are for most of us the hardest thing to deal with at first, but it can be done...and the sooner you start and stick with it, then the sooner you'll be able to add things back in!


                    • #11

                      I'm glad you found this site. You will find tons of help. There are as many, probably more, treatments as there are symptoms.
                      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


                      • #12
                        You've really been through A LOT for being so young!!! I am a newbie here, so I can only advise you with what's been helping me with my IC. I have pain issues though, not frequency and urgency.
                        When you get your insurance (soon I hope!!!) You really need to seek out a great Uro-gynocologist or a gynocologist who specializes in pelvic pain and/or IC.
                        I take Elmiron - helps to restore the bladder lining. I also go into my doc's office twice a week for bladder instillation treatments which I LOVE. It puts a soothing solution right into your feels great for me. I am on hydroxydine which is an antihistamine. I recently started taking Glucosomine with MSM b/c I've read good things about it, too.

                        I am on the diet, but HATE it and haven't noticed much difference in pain. I will tell you I don't have to pee much at all though so it must be doing something. I am going to see a nutrionalist next week who specializes in IC b/c I can't exist on this diet. I feel unhealthy and have no energy whatsoever. I am also really crabby.

                        Good luck! Browse this site - it has great info and the people here are SO helpful. You really need a good doctor though so you can get well.


                        • #13
                          Cybalta, Neurontin, And Amptripillin (sp) All Helped Me Plus Percocet And Zanaflex. I Went To Pain Mgmt And They Got Me Through It

                          Good Luck


                          GO YANKEES
                          :woohoo: :woohoo: