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help please

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  • help please

    I was diag. with IC in Feb. of this year. I have been taking elmiron and CystaQ since february. I was doing rimso-50 instillations for 3 months however I was not getting urethral burning relief. I stopped the instillations because the burning I went through and the flare ups following the treatment were not worth the one to two days of feeling 80% normal. Recently my doctor put me on junel birth control. I am quite frustrated with this as I fight the fact that I do not believe synthetic hormones are healthy for females to take. But against my belief I am taking it and have been for 26 days. The doctor put me on it because I am seeing a cyclicle pattern with my pain. I get a bad flare up 1-1 1/2 weeks before I start my period. Then during my period the flare up continues until about day 4-5 of my period. My period since I was diag. w/ IC has progressively turned into a monster I hate to visit with every 30 days. I went from a female who never had any pre-menstrual symptoms and would have a 38-42 day cycle to now a female that has all known pre-menstrual symptoms along with IC flare ups as well and I am on a 30 day cycle well at least I was until the birth control was added. Now I am starting my period 26 days into the birth control and I have more pain than ever. Does anyone know what might be going on? Has anyone experienced this? Anything that has helped?

    My doctor has told me he is at the end of his recommendations for therapies(Regardless of his ego and belief that he is the best in the area). I know there is something out there that will take the burning away. I know there is something that will help the pelvic pain. I will not give up but I do need help from fellow Ic'ers.

  • #2
    Have you been checked for infections recently? Both bacterial and yeast can flare up just prior to your period and cause complete misery.

    Sending you hugs............nothing about this disease is easy.........
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author

    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........

    Other IC Diet Resources:

    IC Diet Webinar
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    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*


    • #3
      I wish it were that easy. I have been tested for both and there is no trace of either. In deb. I had a ct scan and all organs showed they were functioning properly as well.


      • #4
        Urethral Pain

        Hi -

        You might want to go and read the posts on the Board that are under Urethral Pain. Hopefully you will find some help there as far as what has worked for others.

        Hope this information is helpful to you.



        • #5
          I too suffered from urethral pain constantly sometimes worse than others. I use coconut oil combined with tea tree oil topically on the urethral area. I recently started marshmallow root pills and slippery elm pills that seemed to help a bit. But I was reading about urethral burning and read to use a douche and put half water and half hydrogen peroxide and then rinse with plain water three times after douching with that solution and BINGO! I have been pain free for 12 days now with no burning pain. That is the longest time in over a year that i have felt this good. I know it sounds crazy but it worked! Hope you feel better soon.


          • #6
            When I last saw my gyno/urologist he said though it feels like urethral burning it's not actually my urethra nor my bladder in sense. He believes it is muscular. And that I either have to learn myself to release the tense muscles or I will have to go to a pelvic floor therapist. As I've read on this forum it sounds pretty common. However I am mostly having the bad burning when I'm close or on my period. Any thoughts