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What Happened!?!?

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  • What Happened!?!?

    Not that I'm complaining, but I find this VERY strange! I was diagnosed with OAB and mild IC in December. My symptoms REALLY flared for the first time in October, and it was a nightmare. For the last 10 years, I have had boughts of frequent urination, but nothing that really lasted. October 12, 2006 changed all of that. I had ridiculous frequency and seriously constant pressure (like I always had to go). From October until about 3 weeks ago, my symptoms would lessen (but never go away) and then worsen again. I have been so hesitant to get my Rx for Elmiron filled because I wanted to see if other things could help first. My doctor started me on Detrol LA for OAB, and I had planned to start the IC diet, but before I really got the chance to dive into the diet, my symptoms greatly improved and has stayed this way for about 3 weeks. I don't go to the bathroom but 6-7 times a day and the pressure has reduced in intensity (I feel very squeamish writing this... I feel like I'm going to jinx myself). I haven't been doing the diet and I'm still fine. At first, I thought maybe I do have primarily OAB, but I don't really think that is accurate since I've still had boughts of pressure over the last 3 weeks. I did have one episode, which makes me think it's not just OAB. Last week I drank a Smirnoff Black Ice, and the next day I had lots of pressure and frequency, but once that day was over, I was fine again. I dunno... I just hope this lasts. What do you think?

  • #2
    I just hope the symptoms continue to improve.

    Stay safe

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    • #3
      Well, my experience has been the IC ebbs and flows....hence the term 'flares.' So, maybe you're heading out of a flare. Good! Hope you continue to feel better and better.


      • #4
        sure sounds promising!

        Indeed, that sure sounds promising. You just keep on doing what you know to be working best for you... and pat yourself on the back... for all that you have done, and will continue to do, to keep helping yourself. I mean after all the diet, is really the biggest whopper of all, so if everyone would have followed it, all these years, maybe IC would never even have come to be! Considering the dietary options we have today in comparison to that of 10,20 and more so years ago! We definately have the ability to overdo it, overload it, and then we actually have the nerve to wonder what happened in the first place! haha, in the whole of it, it seems so simple. But in all actuality, it is far far different, and we all have such different level of severities, capacities, symptoms and what not. So all you need to know is that your doing the best for you and what a better way to affirm such results, than by achieving the greatest goal! Feeling better! I am so happy for you! I wish you all the Health, Wellness, and Faith that this experience could ever provide! :woohoo:
        Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

        Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

        Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


        • #5
          I'm glad you are feeling better. I hope it continues.


          • #6
            Confused about remissions

            Hi there. I am pretty new to all of this. I hope that some of you can help me out. I have been dealing with IC for a year. I was diagnosed in Jan. 07. Last year they gave me Detrol which seemed to help at the beginning. Then I went into a month of remission and than it came back for about 6 weeks. I went off the Detrol again and I felt better. So from Septemeber until late Dec. I felt 100% normal. IS this waht they consider remission? I was VERY excited. Last Dec. I came down with bad upper resp. infection and the problems with frequency and pressure in my bladder began again. My gyno. said to start on Vesicare but that I should see my uro. again. I was seeing her for a 2nd. opinion about my bladder issues. She too said IC, but to see my uro. At the end of Jan. after taking the Vesicare and not seeing much imrovement, my uro. said he is now going to treat me for IC. I stopped the Vesicare and started Elmiron. The next day I felt so much better. Obviously not from the Elmiron that fast! Like when stopping the Detrol, stopping the Vesicare seemed to help??? Anyway, the Elmiron made me very sick to my stomach and my hair began to fall out at week 4. I was feeling much worse although I believe my bladder was feeling better. I started to become very depressed over the side effects I was experiencing with the Elmiron and thus my bladder began to flare up again. My stomach was a mess on the Elmiron even after cutting down the dose and breaking open up the pills. The doctor told me to stop taking the Elmiron. That day I began DMSO cocktail treatments. My doctor was very understanding and the nurses were so kind to me as I was a mess.

            I am having a series of 8 treatments. The first four were weekly and now I am going bi-weekly. Compared to when I started, my frequency is down to like 5-6 times a day. I maybe went 8-9 which I guess isn't so bad compared to what many of you are going through.

            I am handling the treatments pretty well. Other then the initial discomfort. While the frequency is down, I still have the pressure in my bladder and some occasional burning ( not when I go though). My nurse told me to give this time. Many people don't get improvements until after 6 treatments or so nad even after we will do maintence treatments as I need them. My doctor said he wants to see how I do and then maybe try taking Elival. I am scared to take any meds. after the reaction I had to the Elmiron. Did Elival help anyone?

            So after all this blah.blah I have written......when you go into a remission do you feel pretty normal? I know many of you have been dealing with this for a very long time and with much worse conditions then me. I haven't felt normal in 4 months and am wondering if I ever will!

            I am sticking to the IC diet as I have GERD so that helps both! I am on Protonix for GERD. I take Prelief at times and I take AZO at times to help with the pressure and burning.

            I just want to feel better. I am glad that my treatments are helping and I know I have to give it more time. I know I can't expcet a years worth of problems to be solved in 6 weeks. I trust my doctors and my nurses and I know that they told me they will have to keep trying until something works.

            For some reason today this is really bothering me emotionally. I have 3 small children who need to happy mom. I have a great husband but he doens't understand.

            Any suggestions any POSITIVE stories to give me some hope.

            Thanks for listenting and Happy Easter!


            • #7
              Hi Melissa,

              Welcome to the ICN!! It can be very frustrating to find a therapy that works in the beginning so I, and everyone here, know exactly what you are going through. You are not alone!!! I myself have only had one little remission, and it was after I stopped taking Estrace & Prometrium, HRT, and it only lasted two days. Sort of the same thing as you except shorter. That was the only little remission I ever had, and that was in Feb. 06. I don't do well on any meds, even Tylenol because my bladder is that sensitive so it can be challenging for me. I take Cysta Q, Prelief, (Uristat, and Urised when needed), and of course the diet. I still go about once every hour, but I can sleep almost through the night getting up only once or twice (that is a huge improvement to my original 10+ X's a night. I still have symptoms, and day to day they vary. Some day urethral pain no pressure, other days the whole nine yards. I am doing much better though than in the beginning, and to me that is success. Also being aware of what makes it worse helps a lot to control how you feel. I too get down some days, and I pray a lot, and talk to my friends who understand. It helps to talk to someone about how your feeling, like a counsellor, or psychologist etc... Positive results do happen around here, and I'll tell you what people told me in the beginning: There are a lot of people who aren't on these boards anymore because they are feeling better, and are out there living their lives so believe me there is hope!!! You can PM anytime if you need to talk.


              • #8
                sdg78 - Glad you are experiencing some good days! That's awesome. Enjoy it and just be careful with those dietary triggers.

                mhilliard - I'm going to start a new thread for you in the newly diagnosed section so you can get more feedback.

                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