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  • New to post, need some personal guidance

    I was diagnosed with ic and endometrosis last September. I was 28 yrs old at the time. My doctor did a full hysterectomy on me and checked out my bladder at that time and gave me the full diagnosis of ic at that time. He suggested I take the elmiron, for starters then I had 15 bladder installations, for 15 weeks. He also treated me for the endometrosis with a shot of Lupron. Which threw me into menopause, ( I still have one ovary) After all that treatment I did feel some relief--definitely not pain free. The Lupron made me nutty, I didn't sleep well and the hot flashes were awful. I hated it so much. They wanted to give me another injection 3 months later, and well I had hit rock bottom, So I made the decision to not to take the next shot and to stop the bladder installations, and all other medications..I had been prescribed. I felt so depressed. My thinking was If I just changed my diet then everything would get better without all the traditional drugs. Well...easier said than done. I am now in another flare-up and frustrated as all get out. I am going to work on a ic diet plan, and start cutting out foods that I know will cause me pain. Befor I was diagnosed I felt like I was just crazy, my family doctor couldn't figure out why I hurt so bad, Then I found The doctor that did my surgery, and I can not complain about him at all...He has been very understanding and patient. He specializes in bladder disorders/diseases. So I am very confident he has given me the best of care. (forgot to mention, also have factorV Leiden, and was on blood thinners through the course of surgery and treatment) to add to the stress of things. I just really needed to Vent my frustrations to someone who understands and is living with this. I have a wonderful husband and 3 great children, And with the Grace and Strength of God, we have gotten through all this. If anyone has any suggestions, please do. I have open begging ears at this point. . I think the hardest thing for me is to change my diet while trying to prepare meals for my family. I just don't really know where to begin with all that. Thanks for listening...Whoo almost feel better already.. Fairrah

  • #2
    welcome to the icn, you will find a wealth of info with in these pages. you will also get tone of support.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Hi Fairrah.

      Wow.... you have had a journey and the lupron induced menopause is awful, isn't it. But it sounds like your heading in the right direction. You're following diet which is EVERYTHING! Remember, a wound won't heal very quickly if you pour acid on it every day.... so removing those critical irritants is essential. No coffees (even one cup), sodas, diet sodas, fruit juices, green teas, regular teas.. etc.

      Also... you didn't say what type of instillations you had so can't offer anything there.

      With respect to therapies ... think "calming" or "soothing" ... therapies that can help reduce inflammation in the bladder. An antihistamine (hydroxyzine) can help reduce mast cell induced inflammation. A low dose antidepressant can help calm the nerves that are giving you discomfort in your bladder (amitryptiline, etc.). Elmiron is a coating, aka kind of like a bandaid fpr the bladder. The OTC supplement Cystoprotek also has some coating and antiinflammatory effects.

      If you don't have it yet, make sure that you buy the IC Survival Guide by Robert Moldwin... because it will walk you through the basic therapies and has an excellent section on pain. You can find that in our mail order section at:

      Big hugs and welcome!!!!

      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


      • #4
        to the ICN. So glad you found us.

        Sounds like you've found a good doctor and that he is putting you on the right path. I hope you find relief SOON.

        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


        • #5
          Glad you found us...
          I think just knowing there are so many others out there that are going through the same thing helps me cope, because I know I can turn to the boards with questions and always get the best answers possible..So anytime you are down or depressed or just need to vent, remember we are all here for you


          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:

          Diet Reference Sheet:

          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.


          • #6
            I'm sorry you have suffered so badly. Hopefully we can help you get this thing figured out or atleast support you through this journey!

            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


            • #7
              I'd like to add another to the IC Network. The diet can be a challenge, but now that it's summer, it does make it easier. We have a gas barbecue and I cook lots of things on it. Somehow even a piece of chicken tastes better if it's cooked outdoors.

              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


              • #8
                Hello and let me add another Welcome to the gang!!! As the rest have said the diet isn't easy - but it's so worth it! I too had to get creative when cooking for me and the rest in my household (my mom and hubby). Most times I would make something that gets indvidually seasoned etc, like chicken breasts (and I am with Donna, even if you put nothing on one and throw it on the grill, it's yummy! ), or if I made spaghetti with traditional marinara for them, I'd make a concoction of olive oil infused with fresh garlic and basil and toss my pasta with it. If hubby was making burritos, I would keep out some of the ground beef and cook it up for me with onions (I was ok with cooked onions, although raw could cause me some troubles), fresh garlic and lots of oregano. I'd only buy friendly tortillas (we could all eat them) as well. I'd put my own little burritos in a small 8x8 baking pan. I'd top with lots of mozzarella or Monterey Jack (or both) and bake right alongside hubby's.

                It can be challenging, but you just have to get creative I guess, lol. And for me, it helped to have my foods individually wrapped before frozen. I'd always have individual boneless chicken breasts in the freezer, burger patties, steaks, friendly pork chops. As soon as I'd get home from the store, I'd get to work on wrapping and freezing. Hubby and I would have an assembly line going, lol. I still do that anyway, as it's just easier to deal with and thaw individuals then a frozen block of chicken,

                I'd use pan drippings and safe broths to make pan gravies, my favorite was to season up some chicken breasts with sage, thyme, friendly garlic powder (no additives or preservatives) and some salt. I would pan-fry them in butter. When they were done, I add the safe stock/broth and make my gravy to go with the side of mashed potatoes. Or I'd make homemade stuffing to serve with the chicken. Friendly pork (no additives) was also good seasoned up and served that way.

                Well, once again, welcome to the boards an I hope to see you around! Again, I know the diet is a challenge, but it's very worth the effort!!!

                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