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  • #16
    Re: Do instills help frequency and urge?

    Hey to both monic433 and rshell84!

    I just finished reading both your comments, but I want to reply when I have more time so I don't have to rush and forget something. So I am NOT ignoring either of you. :P

    - Andrea
    My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

    History:

    Age: 31
    Diagnosed: 2011
    Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
    Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
    Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
    Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
    IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
    Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
    Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

    Comment


    • #17
      Re: Do instills help frequency and urge?

      No worries!
      Diagnosed via cysto/hydro 2/6/2015
      Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
      CURRENT TREATMENTS:
      IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
      USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
      PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
      TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

      Comment


      • #18
        Re: Do instills help frequency and urge?

        Hi Andreeuh ! Finally I took today a 3mg sachet of monurol(an antibiotic very popular for UTI in Spain) as I was afraid that discreet bacteriuria could get out off control .I left the sample of my uirne in a diferent labo and asked the boy in he labo to culture what they found even if it was minumum quantity. He told me he would ask the microbiologist to do that and they would try their best.
        Yesterday I experienced many more bladder symptoms and I am even not sure if the medication I am taking for an intestinal parasite they found is also afecting me(It is a three days course and I finish it today so we will see.) .
        I have had good and bad days along the last three weeks since I knew that the bacteriuria was appearing in my urine so I do not know if its is normal to have also good days if ou are having a UTI. I do not have any experience with UTIS so I do not really know how you feel, if you can have good and bad days withouth treating it.At the begining I was sure that it was the candida afecting me but after having taken the anticandida pills and not having symptoms of candida I am not vey sure now of what is happening,
        I will let you know which are the results of the last urianalysis I did today.
        how are you doing these days?
        IC diagnosed by symptoms at the end of september 2011.
        Other conditions:Asthma (controled since 13 years old )

        PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

        Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

        First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

        Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

        Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

        Comment


        • #19
          Re: Do instills help frequency and urge?

          monic433:

          Wow, you have been though so much you poor thing! So your instills are done in a hospital setting? If that was my only option I don't think I would be doing them. At least here, hospitals are the worst places for sick people! So many infections and antibiotics. How worrisome. Thank you for the suggestion about the United Medical Lab, I will take a look at it. Yeah, if your bladder lack any bacteria then you have a whole OTHER set of problems. :/ I am not 100% sure it'd work at all but I would try it just once. That's usually my motto, 'try anything once'. lol My immune system is shot. That's a whole other issue I have and am trying to get answers to. Naturally, the process is not easy in the least. A parasite doesn't sound good. Yeah, I am not sure either. I too seem to have good and bad days. I hope your urinalysis comes back with some answers.

          Thank you for all your information! I hope you're able to find out your own answers and soon! I am doing OK. Just going though my instills which seem to help my medications work better for pain and frequency. But I still have a fever. So it's just a matter of waiting at this point.
          My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

          History:

          Age: 31
          Diagnosed: 2011
          Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
          Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
          Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
          Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
          IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
          Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
          Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

          Comment


          • #20
            Re: Do instills help frequency and urge?

            Originally posted by rshell84 View Post
            Andreeuh:
            Again thanks so much for the information. In early March I had hormones tested/Vitamin D and B12 tested/ and thyroid. My hormones were crazy out of balance then which didn't alarm me because I was getting birth control out of my system but my thyroids were also off

            FT3 was 2.4 pg/ml normal range 2.5-3.9
            FRT4 was 0.7 ng/dl normal range 0.6-1.2

            So the lady at the place I went to recommended trying natural supplements like selenium, zinc, Magnesium and Vitex (all available on Amazon). I have been taken magnesium since August and plan to go get retested next week to see if the months of birth control and magnesium has helped. I tested just hormones again in May and progesterone came back on the low end but I can't tolerate synthetic hormones such as birth control (I use to!) so I guess I could ask about bio identical ones or supplements. You said they tested you for adrenal gland disorders and pituitary gland issues too? Ugh. I hope it just fixes itself!
            All just other parts of the puzzle I suppose. Since my deductible is met for the year I'm taking advantage of it and getting hormones/thyroid tested again, getting a food sensitivity and allergy test done, and seeing a NMD (naturopathic medical doctor). Also might consider instills if my flare starts feeling worse. Hope you have a lovely Saturday.
            Yeah, I am sure my hormones are funky because of the continuous birth control. One of the things they might have me try is to stop the birth control and see if it helps my thyroid. I'd really hate to do that though because my periods left me bed-ridden not to mention it will flare my IC. My doctor also gave me the option of going the 'natural' or vitamin route. It's something I am still thinking of if I want to do it or not. I already take so many pills...Yeah, if they make them it might be worth checking out. Yeah, I have been tested for all of those and nothing came back positive. Haha, I did the same thing when I hit my deductible. I was like, "OK, I want this and this and this tested..." Why not right?

            I am having an OK week. I think the instills make my pain and frequency meds work better. So I am not pain free but taking a pain pill now brings it down to like a 5/10 where it was just making it a 8-9/10. A video game I have been waiting for for ages finally came out so it's a good distraction. :P How are you doing?
            My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

            History:

            Age: 31
            Diagnosed: 2011
            Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
            Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
            Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
            Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
            IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
            Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
            Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

            Comment


            • #21
              Re: Do instills help frequency and urge?

              Hi Monic433 and Andreeuh!
              I sent both of you PM's
              Hope everyone is having a fabulous day xx
              Diagnosed via cysto/hydro 2/6/2015
              Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
              CURRENT TREATMENTS:
              IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
              USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
              PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
              TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

              Comment


              • #22
                Re: Do instills help frequency and urge?

                Originally posted by rshell84 View Post
                Hi Monic433 and Andreeuh!
                I sent both of you PM's
                Hope everyone is having a fabulous day xx
                Hi Andreeuh and Rshell!
                Andreeuh, the discret bacteriuria did not apear in the last test , the one I did in the other laboratory, so , or it has been my vaginal candida what wa appearing in the other test or I have elmiminated it with the PranarĂ³m pills that I told you I was taking (they are esential oils) I think it is the first option the one is more probable because the first three test were done while I was having vaginal candida symptoms and this last one in the other labo I had already taken the itraconazol pills and I did not have vaginal symptoms.On the other hand I did not experience any oher symptoms of a UTI like low fever , just a bit more frequency that was probably the result of the candida and a medication I have been taking the last two weeks. Anyway I more quiet now knowing that there is no bacteriuria in my urine.
                Andreuuh , you said you were in remission, do yoyu remember if yiu still flared from time to time the first year on elmiron? I have been on it for eight months and I think I ma having very good results , the last two months before this last flare were really good , but I think I ma still not stable because of these last days flaring and just wondering if this is the normal pattern or I should be more stable by now.
                rhell I sent you a private mail, thank you for your kind words, I will see how I am the following days now I have finished the antiparasite medication and I am on my normal suplements and Elmiron.
                IC diagnosed by symptoms at the end of september 2011.
                Other conditions:Asthma (controled since 13 years old )

                PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

                Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

                First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

                Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

                Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

                Comment


                • #23
                  Re: Do instills help frequency and urge?

                  Originally posted by rshell84 View Post
                  Hi Monic433 and Andreeuh!
                  I sent both of you PM's
                  Hope everyone is having a fabulous day xx
                  Hi Andreeuh and Rshell!
                  Andreeuh, the discret bacteriuria did not apear in the last test , the one I did in the other laboratory, so , or it has been my vaginal candida what wa appearing in the other test or I have elmiminated it with the PranarĂ³m pills that I told you I was taking (they are esential oils) I think it is the first option the one is more probable because the first three test were done while I was having vaginal candida symptoms and this last one in the other labo I had already taken the itraconazol pills and I did not have vaginal symptoms.On the other hand I did not experience any oher symptoms of a UTI like low fever , just a bit more frequency that was probably the result of the candida and an antiparasite medication I have been taking the last two weeks. Anyway ,I more quiet now knowing that there is no bacteriuria in my urine.
                  Andreuuh , you said you were in remission, do yoou remember if you still flared from time to time the first year on elmiron? I have been on it for eight months and I think I am having very good results , the last two months before this last flare were really good , but I think I am still not stable because of these last days flaring and just wondering if this is the normal pattern or I should be more stable by now.
                  Rshell I sent you a private mail, thank you for your kind words, I will see how I am the following days now I have finished the antiparasite medication and I am on my normal suplements and Elmiron.
                  IC diagnosed by symptoms at the end of september 2011.
                  Other conditions:Asthma (controled since 13 years old )

                  PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

                  Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

                  First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

                  Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

                  Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

                  Comment

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