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  • the drs visit

    so as usual.. i sat there while he talked to me.he seemed mad that i had sought a 2nd opinion and went to the ER.he says he is for sure i have this ... he saw scars on my bladder on the cysto and my bladder would only hold 500cc when most people can hold a liter.i basically broke down and all my questions i had on my piece of paper in my pocket.. the paper never came out of my pocket. i dont feel i can communicate with him but hes supposed to be the "expert uro in town'' and ''hes never wrong'' so i guess i will trust him with this diagnosis. it came at a time in my life when i was already struggling with issues from the past (non-health related) but maybe the pain will teach me something and maybe it will go away someday.until then its percoset,instills,and the elmiron. sigh.. i will just have to accept this whether i wanted it or not.. its here to stay. its not my fault im sick.what made it worse is right after the visit, my 2nd opinion drs. nurse called and said he read the paperwork from the test and to trust this uro. he is a better dr. than him.i also decided to make an appointment with a counselor/therapist.
    Last edited by flowerangela; 02-22-2011, 08:01 AM. Reason: added more.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

  • #2
    Hi there,
    Well at least you have your answer, scars in your bladder, its too bad he didn't tell you this before....
    Hang in there! Hopefully the instills will help you. Have you started those yet?
    So sorry for your pain

    <<hugs>>
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment


    • #3
      yeah.. i have a 2nd instill friday.i just hope the dmso 50 percent is safe cuz ive heard 25 is the safest.thanks for all your care and support cindy so i wont feel quite so alone in this *hugs* i asked the nurse if they saw other IC patients and she said yes but there isnt a support group. i may try to get one started up in my town.
      Newly IC diagnosed as of February 2011.

      Medications I'm on that seem to work:
      Zoloft- one once a day
      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

      Failed Meds:
      Elmiron-after 4 months,digestive side effects got to be too much
      tramadol-allergic
      DMSO treatments(5-6)
      probiotics

      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
      AROMATHERAPY-candles,incense
      Village Naturals Aches and Pains Peppermint Bath Salts
      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

      ACUPUNCTURE/HERBS
      Significant pain relief so far.

      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

      Add me on facebook Angela Hasic

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Lord, make me an instrument of your peace;
      where there is hatred, let me sow love;
      when there is injury, pardon;
      where there is doubt, faith;
      where there is despair, hope;
      where there is darkness, light;
      and where there is sadness, joy.
      Grant that I may not so much seek
      to be consoled as to console;
      to be understood, as to understand,
      to be loved as to love;
      for it is in giving that we receive,
      it is in pardoning that we are pardoned,
      and it is in dying [to ourselves] that we are born to eternal life.

      Comment


      • #4
        No its not your fault I am so sorry you have IC.

        It is a shame your uro doe's not have a good bedside manner.

        I hope he can find the right treatment for you.

        If so your pain will subside 95% my has but it took a second uro to help me and understand the pain icers go through.

        Remember stick with the IC diet and ask any questions on this forum it is supportive and extremely helpful.

        God Bless you and keep in touch and let us know how things work out for you.

        Sincerely,

        Icer Sister Linda
        <center>
        <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
        </center>

        Comment


        • #5
          thanks linda hes not really rude.. he just makes me feel nervous.i guess because i havent gotten to know him very well/havent seen him much.i am glad i finally got to talk to him.at least he knows the pain we go through and is offering the pain meds so i dont have to seek a different dr. for that.
          Newly IC diagnosed as of February 2011.

          Medications I'm on that seem to work:
          Zoloft- one once a day
          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

          Failed Meds:
          Elmiron-after 4 months,digestive side effects got to be too much
          tramadol-allergic
          DMSO treatments(5-6)
          probiotics

          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
          AROMATHERAPY-candles,incense
          Village Naturals Aches and Pains Peppermint Bath Salts
          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

          ACUPUNCTURE/HERBS
          Significant pain relief so far.

          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

          Add me on facebook Angela Hasic

          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Lord, make me an instrument of your peace;
          where there is hatred, let me sow love;
          when there is injury, pardon;
          where there is doubt, faith;
          where there is despair, hope;
          where there is darkness, light;
          and where there is sadness, joy.
          Grant that I may not so much seek
          to be consoled as to console;
          to be understood, as to understand,
          to be loved as to love;
          for it is in giving that we receive,
          it is in pardoning that we are pardoned,
          and it is in dying [to ourselves] that we are born to eternal life.

          Comment


          • #6
            Are the treatments working for you?or is to early to tell?
            <center>
            <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
            </center>

            Comment


            • #7
              Angela: The DMSO itself is 50% DMSO (Rimso 50); it is almost always diluted by about 50% in the doctor's office, which makes the solution the safe 25%. When I was on DMSO they instilled lidocaine too, which brought the strength of the solution to a satisfactory level.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment


              • #8
                oh ok thanks donna!
                linda-it really is too early to tell.suprisingly ive had a pain free day all day..even after they took the foley catheter out. it was a relief to get that one out because i had a leaky one/it was defective.just hoping i can pee without any problems.. havent peed yet so we will see.i am still gonna finish my course of antibiotics. he didnt say to stop them.
                Newly IC diagnosed as of February 2011.

                Medications I'm on that seem to work:
                Zoloft- one once a day
                Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                Failed Meds:
                Elmiron-after 4 months,digestive side effects got to be too much
                tramadol-allergic
                DMSO treatments(5-6)
                probiotics

                THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                AROMATHERAPY-candles,incense
                Village Naturals Aches and Pains Peppermint Bath Salts
                Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                ACUPUNCTURE/HERBS
                Significant pain relief so far.

                MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                Add me on facebook Angela Hasic

                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                Lord, make me an instrument of your peace;
                where there is hatred, let me sow love;
                when there is injury, pardon;
                where there is doubt, faith;
                where there is despair, hope;
                where there is darkness, light;
                and where there is sadness, joy.
                Grant that I may not so much seek
                to be consoled as to console;
                to be understood, as to understand,
                to be loved as to love;
                for it is in giving that we receive,
                it is in pardoning that we are pardoned,
                and it is in dying [to ourselves] that we are born to eternal life.

                Comment


                • #9
                  I hope the instills help. I only had one DMSO treatment (at the time when I had my cysto/hydro). I think I had a bad reaction from it. Everyone acts differently. I hope that you get relief from them. It is never easy going through all of this. Feels as though it will never pass. I think we will all be on this cycle with our good days and bad days. My uro's staff is very understanding and helpful, and are really caring about everything. I remember my uro telling my parents my bladder capacity was about 550-600 mL. So I understand the low bladder capacity.

                  Let me know if you ever have any instill questions. I do them at home (mine are not DMSO). I hope you get relief soon. Hopefully you will have more up days rather than down ones. Unfortunately it takes time to get to a 'normal' state, but this ordeal will only make us stronger in the end. Try to take the pain with strides and grow from it. I try to use my experience to help people. I'm still going through my up and down days, so I understand and so do so many people on this forum.

                  Hope you feel better.

                  Erin
                  24 year old Ph.D student in Organic Chemistry

                  Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

                  My blog (just started):

                  http://imaginenoworries.blogspot.com/

                  Medications:
                  Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
                  Cymbalta 60mg
                  Gabapentin (Neurontin) (3200mg/day)
                  Zyrtec 10mg
                  Xanax 0.5mg up to 3 times a day(spasms, anxiety)
                  Uribel
                  Macrobid 100mg (only on days when doing an instill)
                  Albuterol
                  Yaz Birth Control (3 months on birth control, then period)
                  Pelvic floor therapy
                  Valium 5 mg (inserted vaginally)
                  MScontin 30 mg (3 times a day)
                  Percocet 10/325mg (every 6 hours)
                  TENS Therapy, CVS machine, 30 minutes once or twice a day
                  Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

                  *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

                  Instill:

                  Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

                  Used to do these:

                  Solu-Cortef (act-o-vial) 100 mg: 2 mL
                  Marcaine (bupivicaine) 0.5 % 25 mL
                  20,000 units Heparin
                  3 mL sodium bicarbonate

                  Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

                  Comment

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