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It will NOT always be this way!!

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  • It will NOT always be this way!!

    Hi everyone!

    I posted a while ago (a long while, I believe) when I was in remission and feeling good. I was diagnosed with IC in the spring of 2009. Compared to many of the people on this board, my diagnosis came fairly quickly (and I mean within 2 months or so - sounds like a LONG time, but it's way shorter than most people). Like many of you, I thought I have a bladder infection that just would not clear up. I was referred to a urologist who insisted I did not have IC (based on his on intuition, no less), and said it was just overactive bladder. Well, the OAB meds helped minimally, and the best thing that dr did for me was to give me prosed DS. Unlike many of you, my IC is relatively mild, and comes mainly in ferocious bouts with hormonal fluctuations. Initially, it was only right before and during my period. I have a great OBGYN who referred me to a fantastic urogynecologist who believed me that it was IC. Prior to meeting him, my obgyn started me on elavil, which improved my symptoms IMMENSELY the first night.

    With the help of Elavil, Elmiron and Prosed DS, I achieved significant relief and after 6 months, stopped taking the elavil since I'd had no flares since starting it. I wanted to see if the elmiron had had time to work without the elavil. Sure enough, I was great (I mean, NO issues at all) for 2 years.

    Fast forward to this summer... I suffered my 6th miscarriage in a row, and for some reason, my periods came back regularly for 2 months, and then went all wonky. Right then, my bladder went crazy. I flashed back to the panic, anxiety and fear I'd felt 2 years earlier. I hated being on the elavil since it made me gain a little weight (about 5-10 lbs) which I could not get off. Of course, my doctors said that 25 mgs was to little to do that, but as soon as I went off of it, was able to lose the weight. I decided that feeling better was more important than maintaining my weight where it was, so I went back on it. Again, I got immediate relief. I'm happy to report that after 3 weeks, I've actually lost about 5 pounds, but I attribute this to being much more active this time than I was last time (I'm an avid runner), and being extremely careful about food so as not to aggravate my bladder.

    I say all of this because I remember vividly the fear and anxiety that I felt when I realized I had IC and that there was no cure. There is no cure for migraines or colitis, both of which I also have, but I can manage them very well with medicine and lifestyle changes. For whatever reason, I wasn't thinking of IC in those terms. All I could think was "I'm going to have to live the rest of my life in this much pain." It is true that there is no cure, but there ARE great treatments that can give you your life back. Just remember, the people that feel great aren't thinking about their bladders, and have no reason to come here for support. The majority of people on this board are the ones who are in the worst shape, and needing support the most. I'm not saying that to detract from the people on this forum. I was one for a while, and this board helped me SO much. For the 2 years I felt great, it didn't even occur to me to come back here. There are a lot of people living with IC, having a great life.

    As I said earlier, I am a runner. While my symptoms are really bad, running isn't really an option, but after a week or so of getting back on the meds and getting my symptoms under control, I was back out there. In fact, this past weekend, I was in a 200 mile overnight relay race. It was 30+ hours of living in a van, taking my turn to run my shifts. Sounds like an IC'ers nightmare, right? Well, I'm here to tell you, you CAN get your life back. I was popping prosed and guzzling water, but I made it through. Please don't give up hope, and don't be scared to try treatments. All medicines have side effects, but just because they are bad for some people doesn't mean they will affect you the same way.

    Keep your head up and your hope alive!!

    Rubes

  • #2
    Wow Rube! Your post is exactly what I needed to read right now!!!! Thank you from the bottom of my heart for taking the time to post! I'm looking forward to getting my skis on and resuming my position as coach.

    Comment


    • #3
      Great news Rubes! What medicine do you feel has helped you the most?

      Comment


      • #4
        Hmm - I think the elavil made the most difference for me. I stayed on it long enough to give the elmiron a chance to work (6+months), and then stopped. I was good for about 2 years and recently flared up a little. When I went back on the elavil, that did the trick again for me.

        Comment


        • #5
          this is wonderful! SO glad you are feeling good and have life back. It was people like you that kept my hope alive when I was so depressed and low... I am so glad people keep coming back to tell us all they are doing well. It means so much to those who are crying and suffering!!!!!!!!!!!!!!!!!

          Even though I am doing very well right now too. I still come on here at least 3 times a week so that I can maby give hope to others to. I will always try and be one of those people who stays in contact even if I am doing fine.

          Jenn
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

          Comment


          • #6
            New to IC

            Hello to anyone who might be able to help, or support me?

            My name is Samantha. I just recently have discovered I have IC, and I'm so new to it all! I feel alone because know one understands the pain I'm in! You all seem so strong, and have discovered how to live with it! TEACH ME! PLEASE! I find my issue being the diet. I been wanting juice, but every juice seems to be something I cant have.?

            Comment


            • #7
              Hi Samantha!

              I'm so sorry to hear about your diagnosis, but you have come to the right place. There is a wealth of information on these forums, and the people here are so supportive. Are you on any medications? What are your symptoms? I think depending on your pain (how and where you feel it), people can offer different suggestions. In case you haven't discovered it yet, Prelief is a great aid for those of us with IC. It helps neutralize the acid in foods, so it makes certain foods more tolerable for certain people. (For ex, I can drink coffee if I take prelief, but no amount of prelief would make OJ ok for me. Conversely, certain people may find that it makes fruit tolerable, but not coffee - it all depends on your body, and sadly, most of that is trial and error). I also use Prosed DS, which is a urinary analgesic and antiseptic that really helps with bladder burning and urgency.

              Please post back and let us know what you are going through. There is also a section on the board called "Newly Diagnosed with IC" where you can post for support. Hang in there!!

              Rubes

              Comment


              • #8
                Rubes- Thanks for posting your story. I was also one who was scared to death at first and made a point of reading all the success stories here and enjoyed hearing from the 'veterans' for advice. I've been in remission for several months now but still visit the forum often.

                Samantha - try reading the diet section here. There are a lot of tips on what juices people have found that don't have added irritating ingredients. Pear juice and blueberry juice seem to be the most tolerable. I found that I was ok also with apple juice if diluted and also found a cold pressed watermelon juice that was ok for me.

                Comment


                • #9
                  Rubes

                  I have notice there is so much information on here. I love it!
                  At the moment I'm on no medication, I'm due to see a urologist Wednesday! I was just at a gynecologist last week, and she took down all my symptoms, and said its definitely a bladder problem. She definitely thought it was IC! So she suggested a urologist..So will see what happens this week? I hope they have some helpful info for me?!
                  My symptoms are severe, severe pelvic pain, the pain worsens when I need to go to the restroom, lately the pain is always so I have no idea really what food is irritating me more? Ive changed my diet though, leaning more towards the IC diet. I already ate very healthy before, it sucks to see even some certain healthy things (like fruit) you cant have! I also just had my period two days ago, and I have never been SO sick in my life. For two days I was stuck in bed. I have my normal pelvic pains X20 because of my menstrual cramps as well!! Ive had these pains for a month now. When I first got them I went to the ER, and they did a pelvic exam they only offered me Vicodin they didn't have any answers. My parents pushed for an ultra sound fearing it may have been a cyst of some kind! The ER refused because they didn't believe it was? My parents were very unhappy with the ER doctor because I was in such severe pains! So all I have at the current moment is Vicodin for when the pain is to much to handle like it was during my Period!
                  I have heard of the prelief, also something called Aloe or something? My mom was looking into that for me! Have you heard of it before?
                  I did try some straight blueberry juice, and pear juice with water, it was pretty good actually. Just said that I cant have vitamin water seems I drink that, and it aggravates me.
                  The crazy thing is for the past 3years I have been seeing my doctor, and she kept telling me all these symptoms were just bladder, and yeast infections. She kept giving me the same medicines over, and over. They would help for say a month, but it all would just end up coming back, because clearly it was something adding up to more. As my boyfriend says it seems those three years were just leading up to this big explosion that I'm going through now!!

                  I appreciate your response! I look forward to more information, and speaking with you all!!!!

                  Thank YOU!

                  Comment


                  • #10
                    Samantha,

                    You live in the same neck of woods(few states over and under) as i do. I have noticed with this in the short time i have had it that its also affected by weather... Here its getting ready to snow, and well i have been in bed but i have worse pain as you do around that time of month.... Being new, a little ahead, i would love to talk with someone as i go through this... more personal. let me know if interested...


                    Rubes, Thank you this has Helped me smile a lil today...

                    Jinny, You made my day on my other post! I cant thank you enought!
                    ~Backwoods gurl
                    22 year old Female just trying to feel a little "better" each day!
                    Diaganosed with IC possibly in July 11-
                    Actually diaganosed with it in September 11
                    Frequency- 15-20x's a day
                    Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
                    Good days are short frequencys and maybe 3-5 flares- but rare.
                    What im currently taking:
                    ~
                    Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
                    elmiron 100mg 3x's a day
                    Tramadol 4x's a day
                    hydroxyzine- when needed to sleep
                    Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
                    Tri- Nessa Birth controll pills
                    Pryidum three times a day for one or two days then not for 3 or 4 days at all.
                    ~
                    Strict IC diet... I am diet senitive.
                    ~
                    Heating pad/ blankets
                    ~
                    Hot baths... Normally every night and showers in am
                    ~
                    frozen peas for a ice pack - will be doing often cuz it helps!
                    ~
                    Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

                    Comment


                    • #11
                      Idaho ; )

                      So how long have you had this? I was just at the Urologist two days ago, and she ran a few tests. She decided it is IC, and gave me Elavil! Are you on any medications? Yes I have notice it is the weather too! Yesterday I was in A LOT of pain.
                      Today the pain has been tolerable, like a level 6. Ive been keeping a pain, and diet Journal! MY GOD! That time of the month was just HORRIBLE for me, I was in bed for 2 days straight. The Urologist suggested over the counter benadryl to relieve some of the inflammation, and pain! She also said if you know when your period is coming around the same date each month start taking 800 mg of ibuprofen when the pain starts occurring. She said it might help relieve some of the pain.

                      what was Jinny other post? Talk to you soon

                      P.S. Im not sure if I like Elavil? The past three days I have been taking it I feel like its messing with my moods, and emotions! I have felt kind of grumpy,
                      and somewhat depressed! Will see! I ll give it a few more days.

                      Comment


                      • #12
                        Samantha,

                        I have had it since around the time of june or july but got diagnosed in end of sep. first part of oct. I am on tramadol, oxybutynin, pryidum, birth controll, and Rescue instills every week at the docs. I had a cystoscopy done thrusday ( surgery like procedure.) horrible pain since. Missed work friday, and have been in bed pretty much since except this am when i thought i was "ok" and went to find some fabric material to make the boyfriends xmas present... BAD choice... pain is Horrific now... That time of the month i am pretty much dead... and worthless.

                        I cant take tynol, ibuprofen, etc. I am allergic. so no bueno. If you go to the newbie board i have a thread posted that tells my full story. I have heard good and bad from elavil, Dont know if i will try. The doc said we will do instills and go from there. They are a god send but only after you pee them out. They work, Then you pee ( have horrible pain for about 2 hours ) then its perfect for a few days...

                        I do hope to see you soon. I will add you on my chat list. If you want you can private message me! Would love to chat!
                        ~Backwoods gurl
                        22 year old Female just trying to feel a little "better" each day!
                        Diaganosed with IC possibly in July 11-
                        Actually diaganosed with it in September 11
                        Frequency- 15-20x's a day
                        Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
                        Good days are short frequencys and maybe 3-5 flares- but rare.
                        What im currently taking:
                        ~
                        Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
                        elmiron 100mg 3x's a day
                        Tramadol 4x's a day
                        hydroxyzine- when needed to sleep
                        Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
                        Tri- Nessa Birth controll pills
                        Pryidum three times a day for one or two days then not for 3 or 4 days at all.
                        ~
                        Strict IC diet... I am diet senitive.
                        ~
                        Heating pad/ blankets
                        ~
                        Hot baths... Normally every night and showers in am
                        ~
                        frozen peas for a ice pack - will be doing often cuz it helps!
                        ~
                        Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

                        Comment


                        • #13
                          backwoodsgurl.

                          What are instills? They sound painful! ?


                          Today has been a bad day for me. Stupid Elavil is screwing with my moods! Today I feel like I got hit by a big truck! ? I went for a run yesterday, and was feeling better! Today BLAH!

                          I do have a Facebook if you would like to keep in contact that way too! ? : )

                          Comment


                          • #14
                            Samantha

                            Samantha,

                            Yesterday, and friday and saturday were pretty bad for me as well. I do as well have face book. However i try not to expose my whole life on there but yea I will add you and hope to message and chat with you there as well.

                            Instills are a form of medicine. They are shots done through a cathater. they hurt but some they help. ... They have a forum section on them. ...

                            hope to talk soon.
                            ~Backwoods gurl
                            22 year old Female just trying to feel a little "better" each day!
                            Diaganosed with IC possibly in July 11-
                            Actually diaganosed with it in September 11
                            Frequency- 15-20x's a day
                            Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
                            Good days are short frequencys and maybe 3-5 flares- but rare.
                            What im currently taking:
                            ~
                            Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
                            elmiron 100mg 3x's a day
                            Tramadol 4x's a day
                            hydroxyzine- when needed to sleep
                            Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
                            Tri- Nessa Birth controll pills
                            Pryidum three times a day for one or two days then not for 3 or 4 days at all.
                            ~
                            Strict IC diet... I am diet senitive.
                            ~
                            Heating pad/ blankets
                            ~
                            Hot baths... Normally every night and showers in am
                            ~
                            frozen peas for a ice pack - will be doing often cuz it helps!
                            ~
                            Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

                            Comment


                            • #15
                              Has anyone noticed a weight gain from the medicine ELAVIL? just curious!

                              Comment

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