Interstitial Cystitis versus BPSXX-BPS33 - ICA-Deutschland e.V.

Position paper of the ICA-Deutschland Medical Advisory Board
Interstitial Cystitis versus BPSXX-BPS33
Keep the established name or taxonomic revolution?
The European Society for the Study of Interstitial Cystitis/Painful Bladder Syndrome (ESSIC) drafted a
consensus statement at its last meeting which recommends no longer using the name "Interstitial
Cystitis" (IC), either alone nor in any combinations. Instead it recommends using the abbreviation BPS
for "Bladder Pain Syndrome" followed by a double-digit type indicator. It should be noted that the
recommended abbreviation is BPS and not the abbreviation PBS/IC (painful bladder syndrome) as
introduced by ICS and included in the EAU guidelines.
This recommendation has caused considerable irritation in international forums.
ESSIC is an independent society which has had annual meetings since 2003. It currently proposes a
new definition for this disease complex based on the symptom of chronic pain related to the urinary
bladder, accompanied by at least one other urinary symptom such as daytime and night time
frequency and excluding a mentioned list of confusable diseases. The diagnosis of these confusable
diseases does not, however, systematically rule out BPS.
In this connection the proposal by ESSIC to abbreviate the finding constellation of 1. cystoscopy with
hydrodistension and 2. biopsy by a double-digit code (hydrodistension: X=not done, 1=normal,
2=glomerulations, 3=Hunner's lesion // Biopsy: X=not done, A=normal, B=inconclusive, C=positive)
certainly constitutes a simplification in order to abbreviate the results of established diagnostic
techniques in the case of suspected Interstitial Cystitis.
The abolition of the term "Interstitial Cystitis" has, however a completely different scope and
consequences which the members of the medical advisory board of Förderverein ICA-
Deutschland e.V. expressly disassociate themselves from.
"Interstitial Cystitis" is still unexplained in terms of its etiology. It is a burden both for those concerned
and the attending physicians. It was still largely unknown to many physicians and public authorities 15
years ago. Following many years of honorary work, the Scientific Advisory Board of ICA Germany, like
many other international IC societies, has promoted awareness and research on Interstitial Cystitis. At
present, Interstitial Cystitis is well established in the ICD key (N30.1), as a Medline MESH keyword
with >1500 hits and a term which has a clear meaning not only for most urologists, gynaecologists and
family doctors but also for pension and social security organisations, courts and sickness funds that
find both literature and case law under this term. If the term IC were to be abolished, these efforts
would have to start again from scratch.
There is no doubt that the term IC describing an "inflammmation in the interstitium of the urinary
bladder" can be contested in histopathological and terminological terms. A sub-division of the
symptoms appears to be useful (whether this should only be done based on the results of biopsy and
hydrodistension or whether for instance pain scores, urination logs should be used, is not discussed
here).
However, there are also other historically established terminological errors in our language. Men, for
instance, can be hysterical despite the usual absence of a uterus and the German term
"Blinddarmentzündung" for appendicitis is actually a “Wurmfortsatzentzündung”.
And Hunner's lesion called “Hunner’s ulcer” in German is actually not an ulcer (because the latter
would by definition presuppose a defect in the Lamina propria). The hypernephrome has nothing to do
with "hyper" and mycosis fungoides is not a fungus disease but a cutaneous T-cell lymphoma. Even
acute pancreatitis is actually a necrosis in pathohistological terms but is used as an "-itis" term.
If one accepted the terminological hair-splitting of taxonomists who want to change, after lengthy
discussions, the term Painful Bladder Syndrome (PBS) to Bladder Pain Syndrome (BPS), similar to the
Perineal Pain Syndrome (PPS) existing in the NIH nomenclature, it would actually have been
consistent to create a VPS – Vesical Pain Syndrome.
Of course, the work undertaken by ESSIC deserves our full respect and many of its members are also
close to the ICA Advisory Board. However, we consider that it is slightly strange that a Society which
uses the established terms IC (and PBS) itself in its name is recommending no longer using the term
before even changing its own name.

Whether we really do our patients a favour with the diagnosis of for instance a "bladder pain syndrome
X3" is at least in doubt. We should not suggest to our patients that the disease which they may have
been suffering from for several years, no longer exists according to the current terminology.
Maybe it is the phenomenon of the German spelling reform chaos (which may be seen as a piece of
bungling by certain publishers of school books) that suggests that new spellings for old terms are
progress in themselves. In the current hype for new designations we should actually focus on the
essentials.
That means advancing etiology and sound therapeutic studies with a high evidence level, representing
the knowledge available on Interstitial Cystitis in a neutral and unbiased manner and - pending the
availability of better findings - acting as a serious advocate of patients.
Against the backdrop of this argumentation, a survey amongst the Working Group Infectiology of DGU
(German Society for Urology) revealed that an overwhelming majority of its members are in favour of
maintaining the term IC in the nomenclature.
Since new definitions without new etiological findings do not justify a new designation of IC, the
Scientific Advisory Board of ICA unanimously decided at its meeting on January 19, 2007 to continue
to use the term "IC" and we call on everybody else to proceed in this manner. At the 59th Congress of
our expert society we are looking forward to a forum on "Interstitial Cystitis".
A new coinage for "Interstitial Cystitis" should be reserved for the day on which the underlying causes
of this disease have at last have been clarified.
1. Oberpenning, Frank Chief of Staff of the Clinic for Urology and Child Urology, St.-Agnes-
Hospital Bocholt, Barloer Weg 125, 46397 Bocholt, Telephone:0 28 71 / 20 29 31,Telefax:0 28
71 / 20 29 32, E-Mail: f.oberpenning@st-agnes-bocholt.de
2. Ragi Doggweiler, MD, Ass. Prof, Dep. of Urology University of Tennessee Knoxville, USA
rdoggweiler@yahoo.com
3. Jocham, Dieter, Director of the Clinic and Policlinic for Urology of the University Clinic
Schleswig-Holstein, Ratzeburger Allee 160, 23538 Lübeck, Tel.: +49-451-500-2271, Fax: +49-
451-500-3338, Email: Prof.Jocham.MUL@t-online.de
4. Loch, Annemie, Gynaecological Clinic of the Diaconesse Clinic, Teaching Hospital of the
University of Schleswig-Holstein, Marienhölzungsweg 2, 24939 Flensburg, Telephone: +49
461-812-1405 /1401, E-Mail: lochan@diako.de
5. Roth, Stefan, Director of the Urology Clinic, Helios Kliniken Wuppertal GmbH, Heusnerstraße
40, D-42283 Wuppertal, Tel.: +49 2 02 8 96 - 34 09, Fax: 0202-896-3408, E-Mail:
sroth@wuppertal.helios-kliniken.de
6. Schultz-Lampel, Daniela, Director of the Continence Centre Southwest at Schwarzwald-Baar
Klinikum in Villingen-Schwenningen, Gebäude K, Röntgenstr. 20,78054 Villingen-
Schwenningen, Telephone: 07720 / 93-0, Telefax: 07720 / 93-2498, E-Mail: ksw@sbk-vs.de
7. Stoerkel, Stefan, Director of the Institute for Pathology, Helios-Kliniken Wuppertal GmbH,
Heusnerstraße 40, 42283 Wuppertal, Telephone: +49 2 02 8 96 - 28 50, Fax +49 2 02 8 96 –
2739, E-Mail: sstoerkel@wuppertal.helios-kliniken.de
8. Stratmeyer, Rudolf, Head of the Urology Department, Specialist Clinic Rodenkirchen,
Schillingsrotter Str. 39-45, 50996 Köln/Rodenkirchen, Telephone:0221-9352925, Fax:0221-
9352927, E-Mail: Stratmeyer@t-online.de
9. Thueroff, Joachim W., Director of the Urology Clinic and Policlinic of the Johannes Gutenberg
University, Langenbeckstr. 1, D-55101 Mainz, Tel.: 06131-177183, Fax: 06131-232986,Email:
Thueroff@urologie.klinik.uni-mainz.de
10. Vahlensieck, Winfried, Chief of Staff of the Urology Department of Clinic Wildetal,
Mühlenstraße 8, 34537 Bad Wildungen, Telephone:05621-881032 , Fax:05621-881010, E-
Mail: Winfried.Vahlensieck@t-online.de
11. Van Ahlen, Hermann, Chief of Staff of the Urology Clinic of the Municipal Clinics, Am
Finkenhügel 1, D-49076 Osnabrück, Tel.: 0541-405 8001, Fax: 0541-405-8099, E-mail:
vanAhlen@t-online.de
12. Woerdehoff, Alois. Practice Clinic, Ursulinenstr. 39, 53879 Euskirchen, Telephone:02251-
770077, Fax: 02251- 770078, E-Mail: AWOER@t-online.de
13. Hertle, Lothar, Director of the Clinic and Policlinic for Urology, University Clinic Münster,
Albert-Schweitzer-Str. 33,48149 Münster, Tel: 0251-8347442, Fax: 0251-8349739, E-Mail:
prof.hertle@uni-muenster.de