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Hello IC and VV Friends

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  • Hello IC and VV Friends

    Have suffered for years, with first diagnosis of vulvodynia from high oxalates. Two tests proved that. Last Urololgist said IC also. Am coming to understand how common it is to have both.
    Treatments can be similar but diet and supplements are not exactly the same.

    Low oxalate diet
    No wine, coffee or Chocolate, etc
    1200 mg of calcium citrate w/o Vit D
    2 CystaQ
    Tylenol for pain when I can't stand it
    Cetyl Myristoleate (recommended by Vulvar Pain Foundation)
    Urispas for spasms on a bad day
    Attempting to control endless stress

    I would love to hear from people in a similar situation who have recovered and
    find out how you all did it.

    Saw the post on new research with D Proline. Anybody have more information on that?

    Today I am sad but hopeful.

  • #2
    Hello and welcome to the ICN. I am sorry that you are sad today, but glad to see you are staying hopeful. I find I have to stay hopeful at all times to make it through the days with IC. I am sorry that I can't help you with your requests as I am still in the process of working on getting better. Not sure about the research you are speaking of, but I am sure someone else will come by that does and share with you.

    Again, welcome to the ICN, sorry you are suffering but glad you found us!

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      There is many of us on here who have both VV and IC. The best advice I can give is to find dr's who are willing to work with you. Finding a specialist who treats and is familiar with both conditions can help. You also have to find what combination of meds work. It has taken me 3 years to find what meds work the best. Also realizing that diet plays a huge role in symptoms and severity of symptoms.
      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).


      • #4
        Thank you for your messages

        Sailawaygirl, thank you for your message. Love your screen name.
        Feeling much better tonight. Drank a glass of water with alkaline salts and 1 tsp of sodium bicarbonate. Will stay with this alkalizing plan and see ...

        Gina, am sending you the diet as an attachment right now .. It will be in the form of an MS Excel spreadsheet.

        Hope you both have good days tomorrow.
        Last edited by ICNDonna; 03-26-2011, 03:26 AM. Reason: Removed link to sales site. Advertising is not allowed.


        • #5
          MS excel spreadsheet diet to IC.

          I am interested in the MS excel spreadsheet diet of IC. I sent private message with email.

          Thank you!