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First Uro Appointment she wants to do Hydrodistension Need Advice

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  • #16
    I do hope this app goes well for you and you have found someone who can help you. I am glad this Dr. has agreed to to see you.

    I get the not wanting to travel for nothing, I drove 8 hours to see a uro who had nurse Cratchett for a recp, who told me I could only have a 15 min app for my first visit, she didn't care how far I was traveling from, that was the Dr.'s rule I asked her to ask the Dr. to see if she could book me a longer app, I was told no the Dr. looked at your records and did not tell her to book me a longer time. When I got there the Dr. was mad at only having 15mins and I was much to complicated of a case for her to do anything in 15mins. My GP had sent her records of all previous test that had been done with results and a detailed history, none of which she even looked at before my app.

    Needless to say this app did not go well, I was disappointed but I just pushed on trying to find a uro who was a good fit for me, and I did end up finding one and closer to home for me, and willing to help over the phone, work with my GP when ever possible because he knows how the 3 hour car ride makes me worse.

    I see you are young and in my opinion younger people are less believed than older people, old school teaching I think.

    I know the process is hard don't give up or get too down about it, most people do eventually find someone who can and is willing to help them.

    Let up know how it goes. MG
    My are with you all. May you all find a way to peace and joy in your lives.

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    • #17
      Well, I have great news. Dr. Mcsherry did see me, had read the letter, and says she doesn't agree with diagnosing IC with the hydro, saying that 1/3 is helped, 1/3 has no change, and 1/3 has an aggravation of symptoms. She also said that for my age she doesn't feel a cysto is necessary and since I've had symptoms for so long I do have it. She's given me a prescription for Elmiron, some diagnostic cups to mail to a lab who would send the results directly to her if I have an infection, and a lot of free samples of things. Her office only had a 4 minute waiting time when I went it and she had IC research plastered everywhere on the walls.

      I'm starting the Elmiron on Monday when the pharmacy gets it shipped in. This is such a huge weight off my shoulders
      • 27 year old student
      • Had symptoms since I was 5
      • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
      • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
      • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
      • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


      Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

      What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

      What didn't work: Elavil, vistaril (12/22)

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      • #18
        Great news! Glad it went so well for you and that the drive was worth the trouble
        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

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        • #19
          i am glad it appears as if you have found some one who can help you.

          mg
          My are with you all. May you all find a way to peace and joy in your lives.

          Comment


          • #20
            So glad to hear you found someone to work with you on this. I think half the anxiety over all this is from feeling no one wants to take the time to figure things out. I was so relieved when I found someone who had the patience for treating this condition, and willing try anything I suggest (with in reason that is). I really do believe that some uros don't want to deal with this condition because it can be so time consuming for them, and there is no quick fix like a surgery to cure it all. I got to the point where I could tell on the first dr. appt. how patient or impatient the doc would be.

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            • #21
              yay happy to hear youre getting started on the elmiron nekura.its working for me.let us know how it works for you.
              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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