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  • Doing quite well

    I just wanted to post to let you all know that I am 26 weeks today, and have been feeling quite well for the last few weeks. Since about 22-23 weeks, I have not flared once, and my IC symptoms are very mild, comparable to how they were after 3 years on Elmiron. I am sticking to the IC diet and my safe foods like glue, I am not taking any chances to make this time of calm go away. I know that some people, when they feel better, may use this time to try foods that usually flare them to see if they can tolerate them. While I really am tempted to, I am hoping that if I stick to my diet and keep doing what I am doing, I may be able to make it through the remainder of the pregnancy feeling this way...Which would be just wonderful after the horrible discomfort I experienced in the first trimester! I am am not on any meds, and I take fish oil and vitamin D every day, most days I also take a probiotic as well. I am not sure if it is the pregnancy hormones that have finally kicked in to help my IC, or if it is something else. But I am grateful for this time, right now.
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  • #2
    I am really very happy for you. I remember how terrible you were feeling.
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/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.

    Comment


    • #3
      Congrats!

      That is wonderful news! I am so glad that you can enjoy this special time in your life.

      Comment


      • #4
        That is awesome, and I'm so happy for you!

        Comment


        • #5
          this is so wonderful to hear!!! after all that mess in the beginning, i'm really happy that it's going so well for you!!!!
          Current: -pelvic floor therapy, -weekly uracyst instills

          Comment


          • #6
            I'm so happy you are feeling well!
            I will find out in the next few days if I might have a "bun in the oven too."

            I think sticking to your IC diet is the best thing to do, even if you feel better. My doctor told me that if your feeling better your "gag liner" maybe rebuilding itself! wouldn't that be wonderful.

            Best wishes to you, and I hope you stay well!

            ROSE

            IC (June 2007-September 2010)(Out of Remission June 2012)
            IBS
            Vulvodynia (since November 2008)(In remission)
            Pelvic Floor Disorder (since November 2008)(In remission)

            Current Medications:
            None right now...

            Current Symptoms:
            Burning before Urination in Vulva
            Vulva Pain (on and off all day, and after sex)
            Really bad IC Tummy
            IBS

            Comment


            • #7
              Update

              Well, I am almost 30 weeks now and have been flaring for almost a week. I have NO idea what caused it, I have been 100% plus faithful to the IC diet...I'm hoping it will go away soon. All I wish for is to not be in a flare at term. Anyway, sorry I haven't been posting, I found that I get alot of anxiety during pregnancy, and sometimes going on message boards has felt overwhelming, I get obsessed. So I have been focusing on yoga, taking a mile or more of a walk each day, and getting ready for the baby and getting my home ready for the birth. But I am still here and still thinking about all of you!
              30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

              My experience:
              ~Previously took Elmiron 100mg three times a day
              (9/29/05-7/06)
              ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
              ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
              ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
              ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
              -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
              -20 month postpartum remission from 4/17/09 to 12/10/10.
              -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

              Also doing:
              ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
              ~Prenatal DHA/Fish oil supplement
              ~Vitamin D supplement
              ~Culturelle probiotic

              Comment


              • #8
                thanks for keeping us updated! i'm sorry it wasn't better news and that your feeling so lousy
                Current: -pelvic floor therapy, -weekly uracyst instills

                Comment


                • #9
                  I'm glad you drop in to let us know how you're doing, but sure wish this last post had better news! I was lucky and had my IC go quiet every time I was pregnant. Having a baby using your bladder as a pillow, -or punch bag, plus an IC flare must be an awful combination!

                  I hope this flare you're in passes soon!

                  Vicki
                  "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                  Comment


                  • #10
                    Re: Update

                    Originally posted by massagedoula View Post
                    Well, I am almost 30 weeks now and have been flaring for almost a week. I have NO idea what caused it, I have been 100% plus faithful to the IC diet...I'm hoping it will go away soon. All I wish for is to not be in a flare at term. Anyway, sorry I haven't been posting, I found that I get alot of anxiety during pregnancy, and sometimes going on message boards has felt overwhelming, I get obsessed. So I have been focusing on yoga, taking a mile or more of a walk each day, and getting ready for the baby and getting my home ready for the birth. But I am still here and still thinking about all of you!

                    HI Massagedoula!! I know it has been a really long time that I have been on here, and even longer since I reached out to you!

                    I am really hoping you have been doing well these last few years!

                    I have pretty much been in remission ( with a few symptoms here and there and when I ovulate) for about 4 years now. I do totally fine with diet and to be honest most of the time I question whether I actually have IC.. although my gut tells me better about that.

                    So I am writing you hoping that you do still get these messages even though you don't come on often anymore...to try and find some hope and positivity for getting pregnant. I cant believe that 5 years ago I was on here and writing you then! I was so young... You helped me so much back then... I am hoping you can shed light on this next chapter... sometimes it is hard for me to believe that I am almost in the place that I get to be a mom We are thinking of trying fall 2016.

                    Having said that I am terrified. I know that my IC is mild, and I KNOW that it has been greatly helped with Elmiron, thank god. But I am concerned for the first trimester...and unfortunately I am VERY sure I will have my symptoms greatly worsen in the first trimester. I am just trying to prepare myself. I am just hoping that in the second and third trimesters I can at least enjoy it... it scares me that I might be in agony the whole time

                    I have been reading some of your posts back when you were pregnant, and you have said the first trimester was really hard...? Second and third were better?

                    Were you able to breastfeed after with no problems with your bladder? I do think that I will hopefully have my bladder calm right down after birth.. because most of my symptoms are hormonal... I pretty much only have symptoms when I ovulate or drink wine honestly.... so I am pretty sure the HCG will probably have a pretty large effect... again I am only guessing... but I tend to know my body pretty well...

                    How were you after pregnancy? I know I got myself in to remission ( or manageable) so I am hopeful I can do it again.. what was your experience? Should I be worried about my IC getting worse after pregnancy? Were you able to have manageable symptoms fairly quickly afterwards?

                    The most important thing to me in life is having a family... but I am really scared that it will increase my symptoms to where they are unmanageable!

                    Any advice you have would be so appreciated

                    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


                    • #11
                      Re: Update

                      Hi!

                      I have two kids now, a 6 and a 3 year old. I have been in remission since immediately postpartum after the 6 year old, and still in remission now. I think it was breastfeeding hormones which caused the remission, but I just weaned the 3 year old and still seem to be doing OK!

                      I did not take any meds during the pregnancy of the 2nd, and took Elmiron up to about 8 weeks with the first. I am not currently on any meds for IC.

                      I think hormones are such a big factor in IC and I know, for me, pregnancy and breastfeeding were the best treatment I could have ever done.

                      I wish you ALL THE BEST!!!
                      30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

                      My experience:
                      ~Previously took Elmiron 100mg three times a day
                      (9/29/05-7/06)
                      ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
                      ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
                      ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
                      ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
                      -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
                      -20 month postpartum remission from 4/17/09 to 12/10/10.
                      -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

                      Also doing:
                      ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
                      ~Prenatal DHA/Fish oil supplement
                      ~Vitamin D supplement
                      ~Culturelle probiotic

                      Comment


                      • #12
                        Re: Update

                        Thank you so much for writing back I am so scared of having a baby! Ah! But so excited. I like to think that your symptoms and mine are similar and also our response to Elmiron. I can only hope for a result like yours. My IC is mostly hormone related I think.. I only have symptoms when I ovulate and that's about it. Is this or was this the same for you? Any other advice for me? SO glad you are doing well!!!!
                        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

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