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  • Just diagnosed

    HI! I was just diagnosed with IC this week after struggling off and on for 2 years with mostly unbearable frequency. Unfortunately, all the dr. told me was to go home and research on the internet and gave me very little guidance.
    Any words of wisdom?

    Also, any one know of any good dr.'s in the South Carolina (even Atlanta or Charlotte area)? I feel like I need a dr. who will give me more than just a few minutes of his time.

    I tried AZO and it made things worse. Just don't know where to go from here.

  • #2
    If you go to http://www.ic-network.com/md/listing..._Carolina.html you may find a physician in your area, who has been recommended by other IC patients.

    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
      Donna gave you good links I wish you the best.
      <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>

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      • #4
        IC is a learning process.

        Having IC is a learning process - I've been diagnosed for 7 years (suffering for 18) and am still struggling to figure out the rights and wrongs, the do's and don'ts. Did your diagnosing physician prescribe you anything? I would be shocked if not. You should start Elmiron right away to start rebuilding the GAG layer of your bladder (this is an immense help to many within 6 months) and also consider with your doctor other methods of treatment such as a low dose antidepressant for nerve pain, an antispasmodic for bladder spasms an antihistamine for the allergic factor of IC. A wonderful and renown urologist is in Greensboro, NC - Dr. Evans. He specializes in IC and I can personally say he is worth the trip. He is knowledgeable, up to date and caring. I'm sure you can find some of his interviews online somewhere concerning IC treatments.

        Good luck and while it will be a hard road ahead, don't ever let IC control you - you are more than this illness and have a wonderful life ahead and much to offer! I consider myself somewhat of an IC veteran so if you ever need some advice feel free to email at [email protected]


        Molly
        Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

        Medical research addict.

        Likes: hot baths and naps with cats

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        • #5
          The Fantastic Journey

          I totally agree with Eyeliner 128. IC can be a cunning disease producing feelings of depression and helplessness. Be encouraged, we do learn to live with IC and engage in productive, happy lives. My journey lead me to this site. When I first arrived, I was very frustrated and thought things would never get better. Over time I located a caring IC doctor and found the encouragement and support of this fellowship.

          I make it sound like an overnight adventure but it has truly been a journey. I am so sorry for why you had to come but so glad you found this place .


          Have the best day you possibly can.

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          • #6
            my advice for living in the south with this is move to a city with excellent hospitals and doctors if u can such as atlanta,raleigh,knoxville,nashville,orlando,etc.teaching hospitals are usually the best and up to date on ic and bigger cities have ic support groups as well. im considering moving to raleigh nc for my ic for the duke university hospital there.
            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
              icky feeling in the bladder

              I was diagnosed with ic/pbs june 28 2011 and i have to take puridium all day because if i dont my bladder gets a uncomfortable feeling besides the pain it makes me feel achy and gross it gets to a point where i hold myself cause its a pressure feeling i dont know how to explain it i just feel gross and it also feels like something is in there moving around does anyone feel like this i am currently taking
              puridium- works
              Tramadol- causing me worse headaches not taking my pain away
              Elmiron- causing me headaches

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              • #8
                I am glad you are considering a new doctor. I went through the same thing as you recently and my doctor hurried me out of his office after giving me this site address to look at. When I read your post I was angry to hear the doctor did that to you. Why is it that doctor's will spend one minute telling a patient about a serious diagnosis such as IC and tell them to go on the internet? This really stumps me. Though...I have to say...this site has been a HUGE BLESSING to me in many ways. So, I am grateful for my doctor's advice to come to this site. This is a very difficult condition to live with!

                I recommend you read through this site as much as you can. Posts from others, diet tips, etc. are invaluable here.

                I'm wondering if your doctor at least recommended some meds or other options for you.
                Frances

                Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                Other conditions: Migraines, allergies, mild IBS.


                "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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