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  • #1

    New to IC and the forum

    Hi-
    I'm new to the forum and to IC. Two of my docs, my primary care physician and my gyno, both have me tentatively diagnosed with IC. I'm going to see a uro for the first time next week, but when I called to see if he treats IC the receptionist said "not completely". (I have no idea what that means and apparently neither did she). She said if you have a severe case of it he'll refer you to someone else and when I asked who that someone else is she wouldn't tell me, so I guess I have to wait to see him on Thursday.
    In the meantime I'm reading all I can about IC. I'm following the IC diet as closely as I can, taking some naturopathic supplements (which don't seem to be doing much) and have read about the Prelief (gyno recommended it too) so I'm going to get that.
    I have so many questions I don't know where to start. I'm in a lot of pain and not sure what to do right now. I'm still on some antibiotics the gyno gave me and some pyridium. It helps some but not enough. I'm terribly nauseated from it as well.
    I'm also looking for a good IC doc in the Mesa, Arizona area if anyone knows of one. I'd also like to hear from others in my area with IC and their experiences.
    Ok, I'll shut up now, I doubt anyone even read this since it's so long, lol. Sorry to be so long winded.
    Thanks for any help in advance.
    "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~
    Tags: None
  • #2
    Glad you found us..
    BTW ask away that is how most of us have learned to deal with IC.. There are alot of people here on the ICN who are willing to help you and give you any advice they can
    ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment

    • #3
      Thanks so much Ronda. I see already that people here are very helpful, I'm so appreciative of this forum and the people on it.

      BTW, how do you get your pics on here? Lol I don't think there's enough room for my med list and diseases/disorders on here though, lol.
      "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~

      Comment

      • #4


        I don't live in your area, so I don't know of any doctors there, but I want to wish you lots of luck in finding the perfect uro for you.

        I imagine by now you've read our patient handbook, since you're reading so much -- that is GREAT. One of the best tools for fighting this disease is information, so read all you can about diagnosis and treatment. That way, it will help you know if your urologist is a quack or not

        It also sounds like you are doing all you can for yourself at this point -- just make sure your docs know what natural supplements you are taking, since they can interact with other medications... natural doesn't always mean safe, but I'm sure you know all that
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. 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.

        Comment

        • #5
          Sarojini re: Patient Handbook

          Thanks for the warm welcome.
          ACCK! I haven't read your patient handbook yet. Where can I find it??
          "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~

          Comment

          • #6
            DOH! Never mind, lol, I found it :shakinghead: Sorry!
            "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~

            Comment

            • #7
              Queen.. I just posted a new thread on 1 2 3 steps on posting pictures

              http://www.ic-network.com/forum/showthread.php?t=38510
              Hugs
              Ronda

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


              Link to Patient Handbook:
              http://www.ic-network.com/handbook/

              Diet Reference Sheet:
              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment

              • #8
                So happy you found us. Ronda is right, everybody asks questions and most of the time someone will have some kind of answer for you. You did not write much at all, some of us write more than that on a regular basis. I write like I talk, a lot, lol. I'm sorry that your dr's think you have IC but hopefully you will find a good uro and start to feel better soon.
                Christine



                I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                I have tried every oral medication as well as rescue instills and DMSO.

                I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                Also proud mom to the best Bullmastiff on earth, Claus

                Comment

                • #9
                  Hi Queenbean,
                  Just adding another friendly hello
                  And ask all the questions you need, this website has been a lifeline for me for information, understanding & compassion...
                  Hang in there, the hardest part is the beginning. It gets easier as you find out your dietary triggers, figure out your best treatment combination, & start feeling better!
                  Hugs,
                  Kadi

                  -------------------------------------------------------------
                  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.
                  ------------------------------------------------------


                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                  Source - Pinterest
                  "

                  Current treatments:
                  -IC diet
                  -Elavil 50mg at night
                  -Continuous use birth control pills (4-5 periods/year)
                  -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                  -Pyridium if needed,
                  -Pain medicine at bedtime daily, as needed during the day several times per week
                  -Antibiotic when doing an instillation to prevent UTI
                  -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                  -Dye Free Benadryl 50 mg at bedtime
                  -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                  -Managing stress= VERY important!
                  -Fur therapy: Hugging the cat!

                  Comment

                  • #10
                    to the ICN...
                    Sharon

                    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                    Where I can be found most days.



                    Link to the ICN Patient Handbook:
                    http://www.ic-network.com/handbook/

                    Link to the IC Diet:
                    http://www.ic-network.com/diet/


                    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Comment

                    • #11
                      Hi Kadi, Hi Sharon-
                      Thanks for the warm welcome! It's very scary right now, I'm in so much pain and have to wait til at least next Thursday before I see the new uro and I'm afraid he won't know how to treat this after all I've heard. I'm sticking to the diet and taking AlkaLife drops but nothings helping right now. It's so painful.

                      BTW, I'm a former jeweler myself...25 years in the business. Did everything from silversmithing, repairs, appraising, I'm a certified gemologist (Studied at the GIA in NYC), diamond dealer and designer. I got out of the business about 15 years ago when I moved to Arizona. I still play with beaded jewelery every so often though, but not much lately because of my back and PHN that I have that won't let me sit up for long periods of time.
                      I checked out your creations and they're beautiful. I went to buy the "Courage" necklace but for some reason it wouldn't let me. I'd love to have that one. I don't know if you can help me or not but if you can I'd still love to buy it. Courage is something I could definitely use. Mine is all worn out.
                      Right now the toughest thing I'm trying to deal with is the diet. I'm trying to lose 50 pounds and I started EDiets the week before I found out about the IC diet so I'm attempting to combine the two. I'm so frustrated! I have to eat a lot of salad and since all the salad dressings have vinegar or lemon juice in them I don't know what to eat. I just had my husband run up to the store and get a flavored olive oil but I'm not sure that's going to be so great either. ARRGGHH! Frustrating!
                      Anyway, sorry to run off at the mouth. Thank you again for your warm welcome.
                      Ivy
                      "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~

                      Comment

                      • #12
                        --So glad you found us. Sorry you have IC. Any questions, please just ask us.

                        Comment

                        • #13
                          Thanks Mary!
                          "No matter how bad things get, you got to go on living, even if it kills you." ~Sholem Aleichem~

                          Comment

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