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Ulcerative & non-ulcerative subtypes of IC

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  • Ulcerative & non-ulcerative subtypes of IC

    This is excerpted from a 2004 paper on interstitial cystitis. I found this bit interesting & thought others might too:
    (the numbers refer to footnotes and the links to them are in the original document - URL at the bottom of this post)


    Glomerulations have long been considered the hallmark of IC.2 If certain conditions are excluded, the presence of glomerulations will point to a diagnosis of IC. However, many IC patients will not have glomerulations on cystoscopy and hydrodistension.10 Glomerulations have also been found in normal women undergoing tubal ligation.11 Although the term glomerulations is associated with IC, there is no correlation between them and the degree of histological inflammation13 and symptoms14. In 2004, there is increasing consensus that the term Hunner’s ulcer and glomerulations should be dropped
    as they create more confusion. At the Copenhagen European workshop, these two terms have been omitted from the description of the cystoscopic findings.

    Copenhagen Cystoscopic classification of bladder mucosa (May 2003)

    •Grade 0= normal mucosa

    •Grade I = petechiae in at least two quadrants

    •Grade II = large submucosal bleeding (ecchymosis)

    •Grade III = diffuse global mucosal bleeding

    •Grade IV = mucosal disruption, with or without bleeding/oedema

    URL https://www.interstitialcystitiscent...0IN%202004.doc

    Has anyone ever been told by a urologist what 'grade' you are? Did they tell you that after cystoscopy, or after distension?
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2
    My diagnosis is simply "severe IC" --- and the diagnosis was made based on symptoms, ruling out other potential problems, and finally hydrodistention and biopsies. At first I didn't have Hunner's ulcers, but I developed them in my early years with IC.

    Stay safe

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