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Recently diagnosed

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  • Recently diagnosed

    I was recently diagnosed in December 2006 and began to take Elimiron at that time. Why I do find some relief in finally knowing what is wrong I am having a hard time dealing with this. The thought of living this way for the rest of my life makes me so sad and depressed. I guess I can stand giving up a lot of foods that I love which I have been for the last few months, but it gets hard to stand when I still have the constant pain no matter how closely I watch my diet and only drink water. I have been taking Uristat and other OTC relief medicines for several months which do help, but somedays they do not seem to help at all.

    I am having a hard time accepting that my sex life may as well be pretty much over as I know it. My husband of 4 months is so understanding but I feel guilty that I am always depriving him because I can not have sex like a normal person anymore. We should still be in the newlywed stage which we did not really get to have.

    If someone could offer some advice on how to better cope I would be really grateful. I try not to feel sorry for myself. At least I know what is wrong now and it sound like IC will not really effect my health, but I am having a hard time with how it has affected my life.

  • #2
    Welcome to the club! Having the diagnoises does seem like a relief and a sentence at the same time. But now that you know what it is, you can better treat it. I'm on Elmiron too-it took about 4mos for me to see improvement. Added Elavil to it in September and WOW-I began feeling so much better in two weeks! There is hope, you can feel better, it just may take a while (and a few hundred pills-LOL) to find what works for you. Follow the diet as much as you can, it really does help. Don't beat yourself up about the bad days when all you want to do is curl up and feel sorry for yourself-we all do it. IC is hard to deal with, but we all understand (in the way that others w/out it don't) and we're here for you anytime! good luck.


    • #3

      Glad you decided to post! First off, it's okay to feel sorry for yourself...for a little while! You have received difficult news about something that will impact your and your family's life...there's nothing wrong with mourning a bit about that! It's good that you are on the elmiron and doing the diet. And as for the diet, you don't have to avoid ALL the stuff, most likely, but you just need to find which specific things are triggers for you. To do that, add back things one at a time, see if your symptoms change when you add something. If not, then it's probably okay for you.

      It's good that you are trying to hydrate yourself well. I am bad about that myself, but it is very important for your bladder's health. Also, it's important that you have a doctor that is knowledgeable about IC and how to treat it. If you don't, that should be your first move. So many people are miserable for far too long because they've stayed with a doc that knows of IC but doesn't really know how to aggressively treat it.

      As far as the intimacy with your husband, well, yes, it may change somewhat. But, you need to be honest with him...sit down and have a talk about your health and your pain. If you just start saying "no," he might feel rejected, so you need to discuss all this with him first. And, maybe he can even join you on some of your dr. appointments. There is also some pretty good spouse information here on the boards and also in the IC handbook. Just remember, there are more ways to be intimate than just intercourse. There is a great thread written by Sarojini about sex and IC...I think it's under the relationship header. You may also want to check out Many of the people on this site are on that one as well.

      Yes, IC will change your life, even if you have it mildly. But, that doesn't mean you have a "death sentence." There are plenty of treatments available and hopefully you and your doctor can find the combination of meds that is right for you. Also, I try to remain hopeful that as more research is done, more will be learned about IC and what we can do to treat it.

      I think it's great that you decided to join. Please don't hesitate to post any questions or concerns that you may have...there's usually someone around here that has been through at least a similar situation and can offer some comfort and advice.



      "A heart is not judged by how much you love; but by how much you are loved by others."
      ~ The Wizard of Oz

      "If I ever go looking for my heart's desire again, I won't look any further than my own
      back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


      • #4
        Thanks for the encouragement

        Thanks for all the advice. I feel soooo much comfront knowing that there are others who can relate to what I am going through. My family is supportive but it is great to hear from others who have experienced the same symptoms. I am so glad I found the ICN!


        • #5
          Hi There - Yes it is so hard in the beginning! But have faith! I felt sorry for myself so much too. But I realized that me feeling depressed all the time was not helping my family. I woke up one day and said that's it take a grip of the situation and deal with it! I know I will have to live with this for the rest of my life. BUT with the right meds. You will start feeling relief!
          I am on Elmiron, elavil, valium, vicodin and neurontin. It took about 4 months for me to see a difference. I am very careful with what I eat...I loved eating spicy foods. I know thats a no no for me. It's not worth the pain! Trust me things will get better. I thought it was the end of my world last year August. I could not even wear a pair of jeans! Without the horrible urgency. I truly believe god only puts you through so much....hugs and prayers to you.



          • #6
            I know what you mean. My family is super supportive as well, but at times, you really need to hear from people that KNOW what you are going through, not just people that can empathize. Take time to go through the patient handbook here, there's so much great information there and on these boards as well!


            "A heart is not judged by how much you love; but by how much you are loved by others."
            ~ The Wizard of Oz

            "If I ever go looking for my heart's desire again, I won't look any further than my own
            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


            • #7

              I know just how you feel...It just does not seem fair at all, That we have to give up so many wonderful things in life....

              As far as your sex life, There is another site on the internet that has a lot of helpful things and The same person who created this site created the other site..I will give you the site, so go check it out!!


              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.