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  • #1

    I need help please!!!

    Hello everyone,
    I had my last visit with my uro and I am more confused than ever. Initially he told me my urethral discomfort was due to passing granular stones. He ordered an IVP, (contrast dye x-rays), and they proved that theory wrong. Next he did a cystoscope and that showed the 'best bladder he had ever seen.' When I had my last visit with him on June 8th, he told me that a urine sample he had sent for special testing came back showing antibodies for a herpes infection. He made me feel like some kind of tramp but did explain that not all of these viruses are sexually caused. He wanted to start me on an antiviral drug called acyclovir to 'see' how I felt in a week. I told him I would discuss this med with my doctor as I have problems with many drugs. The Elavil he put me on, 10 mgs morning and night is doing nothing now where it had been helping and my urethral pain has been bad ever since the day after seeing him. Pyridium stops the discomfort but I cannot continue taking it forever, Now I am wondering, do I have IC or not? Feel like crying I am so discouraged. Please let me hear from anyone who may have any thoughts on this. I don't know where to turn. Would like to schedule a chat with Jill but can't figure out how to do it. What do I do now???
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    • #2
      If you go to http://www.icnsales.com/icn-personal-coaching/ you can find out how to schedule a time for a consultation.

      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

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        • #3
          I Need Help Please

          Thank you for the information, Donna.

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            • #4
              Ok this is where I meant to post this lol. I did in another forum: ANYWAYS
              Trust me I had tons of problems at first as well. WAS THE WORST 6 MONTHS OF MY ENTIRE LIFE. I saw about 20 drs and STILL didnt have a definitive diagnosis, partly because of my choice (in NOT getting the hydro) but because they just had NO CLUE. Evetually I was diagnosed "on symptoms alone" and given Elmiron. Anyways, when I had my cytoscopy i was also told I had a perfectly normal bladder! Well I must tell you there is nothing normal about it. Lol. Hang in there............ I hope you dont have IC but if you do, this place is a god send. About the herpes think I read in your other post, They tested me for this as well! I think it was negative (I was delirious) but they did say that this can cause some urinary stuff and pain etc....I know how scary this is... I spent three days in a hospital and NO ONE COULD TELL ME WHAT WAS WRONG...

              Trust your gut though, RESEARCH all you can. I KNEW I had IC the minuet that I started to feel my bladder. Im a very stuborm person, and I did more research than oh I dont know... someone who does research for a living!!!?? lol I was on the internet, books EVERYTHING day and night... the only reason and I am ok now, is because of my drive to get well. No one else was gonna help me, and so I had to help myself

              Love and Light

              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!

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                • #5
                  Thanks for all your help!!!! I ended up 'listening' to my gut and went to Urgent Care and found out I had a bladder infection with both white and red cells. Am on Cipro for 5 days now. The doc there was great. He said if I want to try the anti-viral med to wait and see how I feel when this infection passes. He also assured me that the type of virus the uro doc found is in more than half the population and nothing to do with 'being naughty'. He was a bit surprised that the uro doc doesn't want to see me again until April. I may try and go someplace for a second opinion but we are somewhat remote here and the uro's are booked way in advance. So back to the Pyridium for a couple days until this infection clears. Nice to know someone else was 'normal' but ended up with IC anyway.

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                    • #6
                      yea ive never heard of herpes coming back in a urine specimen. odd.
                      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.

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                        • #7
                          Sometimes I am not very good at explaining myself the first time. What one of my tests, (might have been urine), was that I had a high antibody count to the herpes virus. This could be from having chicken pox when I was a child. The high antibodies show a possiblity that it could be active in my system and the urethra is where I am feeling the distress. No bladder pain at all, and the strangest thing. The worst of my symptoms seem to be from morning hours to about supper time and the I get relief for the rest of the evening. This is not the case during flatres or UTI's, which I just got over, (hopefully).

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