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No clear evidence for pain

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  • No clear evidence for pain

    Hi, i'm new to the forum, and it is so helpful to read other people's stories and learn from their experiences.

    I have had fibromyalgia and migraines since I was 13 (for 19 yrs now) and developed severe bladder pain in Feb 2005. I have had numerous investigations which have not been able to identify the cause of my pain, including ultrasounds, blood tests, hysteroscopy and laprascopy in August 2005 (when I started to think there was something wrong in reproductive area), and a week ago a cystoscopy which showed my bladder to look normal.

    However, I have had constant severe bladder pain for 2 years, and apart from the lack of visible signs of IC on bladder wall, my symptoms are so much like IC. Fortunately my problems with frequency are not too bad, but the pain has been extreme and pushed me to my limits many times. Is there anyone else out there confused like me who is in a lot of pain but it is not showing up in diagnositc tests? I did read somewhere on the net that sometimes bladder abnormalities can take a few years to show up on cystoscopy, so is possible to have pain but not visible signs yet. It is possible I may have what the urologist called bladder fibromyalgia (chronic neuropathic pain in bladder). After the cystoscopy my body acted like it had a UTI including fever/feeling unwell - still waiting for pathology results), but whenever I've been tested for these symptoms in the past, as I have been intermittantly over the last 2 yrs, the results come back negative.

    I have struggled at times with depression which always develops in conjunction with bad pain flares. Some of my strategies for coping include listening to music, playing guitar, meditation, breathing through the pain, being in nature, and distractions like TV or getting on with a task. But sometimes pain is too severe to do anything. Can spend days in bed, barely able to stand, let alone walk. Have to keep my spirits up. Have started gentle yoga classes that combine Feldenkreis - was in a lot of pain after first class but have coped well since. Has been good for body awareness.

    Anyway, just wondering how others out there who might still have no clear diagnosis manage to cope with the pain and uncertainty.

    Thanks again for this forum - is so helpful.

  • #2
    I am glad you found us.. Did you just have an in office cysto? because if that is all you head, there is no way for them to tell if you have IC. Usually doctors do a hydrodestention/cystoscopy under general sedation in the hospital. The can also tell my a potassium test, but there not very reliable because a normal bladder can react to it too, from what I have been told. I hope you find your answers..
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Thankyou. I had the cystoscopy as a day procedure in hospital, but not hydrodestention under general sedation. I'll speak to my doctor and urologist about this. Having a challenging day today, but just have to remind myself that things do get better again.


      • #4
        Just seconding what tiggergal said - a cystoscopy without hydrodistension will rarely show the signs of IC so it isn't surprising that it didn't for you. You could still have IC.

        I think you'll definitely find some others here who are experiencing the same frustrations with not having a diagnosis yet, but definitely having the symptoms of IC. Hopefully they'll see your post soon.

        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


        • #5
          Thank you. I saw my doctor the other day and she had some results sent from the urologist. Apparently the uro did do a biopsy and there are something that I think she said were called skin tags(?) which indicate some type of infection/damage that may have been there in the past - is no longer present but has left signs it was there. So still not sure if I also have IC, or whether it is neuropathic pain entirely relating to my fibromyalgia condition. IC and fibro are often found to be co-occuring conditions anyway.

          Feeling much better now anyway - have increased my Tramadol intake back to 100mg slow release which has helped with the pain.



          • #6
            If your doctor is not willing to do a hydrodistention, you might ask about having a potassium sensitivity test done. When I had my first cysto, my bladder appeared to be completely healthy and normal. I even had some polyps removed from my bladder under anesthesia without the IC showing itself. It wasn't until my bladder was over-distended under anesthesia that the IC was apparent.

            Stay safe

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