No announcement yet.

Does this sound like YOU?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Does this sound like YOU?

    Hello from southwest Missouri
    First of all, can I say what a long journey this has been...
    I know a lot of you can agree.

    Two days ago I was told about IC and so I'm searching it out.
    I have had unexplainable abdominal pain for over two years, constant & 24/7. Stress makes the pain a lot worse, so does having to go to the bathroom & having to hold it. It's worse after I've gone to the bathroom. A burning feeling in the pelvic region might explain it better.
    The pain is similar to a UTI - which i've had before & tests show I do not have one now.

    With all the tests: MRI's, internal/external ultrasounds, ct scan, laproscopy and everything else imaginable....10 different doctors & nurses examined me so far & have found nothing to explain this pain.
    2 obgyns, a urologist who did NOT listen to me, and a GI.

    I am going to a new urologist who I plan to ask about IC.
    The pain has become more than just "that pain in my pelvic region" but an emotional burden to me & my marriage.
    I need answers desperately. If this sounds like any of you please let me know.

    What have you done as far as treatments & what do you recommend and not recommend?
    THANKS for anyone who takes the time to read this.
    God Bless

  • #2
    You're on the right path...

    I can totally empathize with you; the whole marriage thing is killing me, too. My husband and I have only been married about 2 years and we want a child; I can't even begin to think how this would feel pregnant.

    It seems like you have IC--did you mention having a cystopscopy, uro-dynamics tests, etc.?

    I'm going through the ringer with tests right now as well--didn't even get a call back for my CT done on Monday; I'm guessing that it was fine and they'll just tell me that at my follow-up next week.

    Isn't it terrible to wish for something to show up? Having symptoms with no answers is a curse.

    Keep me posted.


    Current medication: Soul-searching

    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.


    • #3
      yes, having these issues with no answers is very heartbreaking. i feel for you. i hope your ct scan atleast gives you an answer & for a speedy recovery once you do!


      • #4
        Yes it sure does get to you emotionally and physically. I thought I was going crazy when I found myself wishing that something would 'show up' on my pelvic ultrasound to explain my symptoms. How crazy is that - hoping for an abnormal ultrasound! Alas, all was normal. Even my bladder was normal according to the cystoscopy with hydro. After the exclusion of all else is when I got my diagnosis of IC/PBS. It still amazes me that all tests can be normal looking yet we continue to have all these symptoms. Such a mysterious condition this is.


        • #5
          does this sound like you

          My IC was diagnosed through cystoscopy with hydrodistension under general anesthesia. Has anyone spoken to you about that?
          My sytmptoms were pelvic burning, frequency and urgency, in the absence of a UTI.
          The first thing I tried, and am still using, was the IC diet. If you haven't given it a try, you might want to. I found it very helpful in calming some of my syptoms.
          Other than that, I've been using heat, baking soda in water, Prelief with foods that might cause a problem warm tub baths, stress reduction and rest when necessary.
          I hope your Uro will have some answers for you.
          Let us know,


          • #6
            Hello Brianna,

            Welcome to the ICN. Your symptoms do sound like they are possibly IC. Unfortunately it does take quite a journey to get the diagnosis. More for some than others. I think you have really been around with this problem. I hope that the next appt gives you some answers you are looking for. My signature below contains two very helpful destinations for research. One is for the Patient section of the ICN and will help you with understanding a lot about IC and the IC diet which is a good thing for you to look into while you are in the process of looking for a diagnosis. The other one is for the New AUA guidelines for diagnosing and treating IC, they are very helpful in understanding how things "should" be going with your treatment. I am very lucky to live close enough to one on the DRs that contributed to the new standards and that is who I see. If you look on the home page you will also find a heading for Doctor search. You might want to take a look and see if any of the Drs listed on in your area.

            I wish you the best and hope you find relief and answers soon,

            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