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Its official, I have IC.......can't believe it!

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  • #1

    Its official, I have IC.......can't believe it!

    I had my first appt. with my pelvic pain specialist yesterday and he officially diagnosed me with IC and Vulvar Vestibulitis and High Tone Pelvic Floor Dysfunction. I am going to be taking Wellbutrin, Elmiron only 100mg right now but working up to 300mg over the next 3 weeks, numbing cream for perinial area, 25mg antihistamines and 9 weeks on 1 week off birth control pills. Also he gave me hydrocodone for pain. I will also be seeing a physical therapist.

    This is all mind-boggling. I can't believe I have a disease. I can't believe I can't drink coffee and eat what I want. Its 8am and I'm chewing gum instead of drinking my 2nd cup of coffee! Boy will I have a headache later...

    I have to browse this site but I need to know what people eat, like for breakfast, lunch, dinner, snacks. Seems SO limited! I ordered my prelief today and looked at low acid coffee on the web & it seems very expensive.

    Will be taking to you all alot. Until then....

    Jen
    Tags: None
  • #2
    Sounds like you are off to a really good start! I know you'll find great support and information here. This site helped me more, in some ways, than my uro ever could.

    (Hope your caffeine headache isn't too awful today. )
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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    • #3

      Have you looked at the IC Patient Handbook? It has a bunch of good tips..Well if you need anything just let us know, we are here to help you get through this..
      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

      • #4
        you certianly came to the right place, you will find a wealth of information here..
        if you have any questions pleae ask, thats why we are here.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment

        • #5
          and definitely ask us whatever you want. While we're not a substitute for your doc, we can surely share experiences with treatments and different diet things....
          ****
          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

          • #6
            Things to help your Pelvic Floor dysfunction

            Hi,

            Valium 2 mg three times daily helped me more than anything else for the pelvic floor dysfunction. Taking baths twice daily for 15-20 min, ice packs, a heating pad, and analgesics helped me as well. Make sure you don't over do the sitting - it makes the pain from pfd worse. Sitting on a pillow or cushion helps.

            If you print off the diet from this IC site you will find the there are quite a few things you can eat. I put it on my fridge. Gradually try to add more things to your diet. You don't want to get malnourished. You can't take vitamin C in pills or oranges, tomatoes, etc. Make sure you eat other foods with Vitamin C such as broccoli, red and green peppers, etc.

            If you look at some of my earlier postings in the newly diagnosed section you can see some of the things I can eat.

            Good luck.

            Kathy

            Comment

            • #7

              I know I am in the minority but I don't have food sensitivites. Except for gaining weight, I can eat what I want.

              Stay tuned-in. You will find lots of support and help here.

              You are way ahead of the game....now you know what it is,,,, IC.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas
              Louann

              Comment

              • #8
                Use the IC diet and that really helps. As you follow it you can add other food and see if that bothers you. I follow that fairly close and I also have stomach problems so I have to follow that one also. Sometimes I want to just not eat but there is always something to eat.
                Interstitial Cystitis Stomach problems
                diastolic dysfunction
                vascular insufficency of left leg
                pelvid floor disorder
                hypothroidisim
                asthma
                bread cancer - 5yrsl. remission
                swollowing difficulty
                fatigue
                lots of doctors
                lots of med.














                Keep your eyes on the Lord and he will direct your paths.

                Comment

                • #9
                  My very favorite breakfast is hash browns with over-easy eggs on top, toast with real butter and low acid coffee. I get my low acid coffee from Trader Joe's. I get the beans and grind them myself. I also have a toddy maker, which lowers the acid even more.

                  Check the ICN Shop (link is in my signature) --- they have lots of yummies.

                  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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