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Joint meeting ICS and IUGA, Paris, 23-27 August 2004


This year the annual meeting of the International Continence Society (ICS) was held jointly with the International UroGynecological Association (IUGA) at the Palais des Congres in Paris, 23-27 August. The conference organisers kindly granted the IICPN Foundation a complimentary booth from which to distribute information on interstitial cystitis and associated disorders. Grateful thanks to Medtronic for its generous sponsorship which enabled us to undertake this project in Paris.

IICPN booth

The fact that this was a combined ICS and IUGA meeting meant that this conference was attended by large number of gynaecologists, urologists, physiotherapists and nurses – some 3500 – from around the globe.

In addition to the latest information on IC itself, we were also able to offer delegates information on associated disorders, including vulvodynia/vulval pain syndrome. There was a great deal of interest in the vulvodynia information kindly provided for this occasion by the National Vulvodynia Association (NVA) of America (www.nva.org).

New French IC support group

Since this conference took place in Paris, it was a unique opportunity to promote the new French IC patient support group among the French delegates. The IICPN brochure in French “La Cystite Interstitielle” and our French leaflet (both available on our website) proved to be very useful, likewise the information provided by the French-language support group in Quebec Canada (www.cystite-interstitielle.org). This once again emphasised how valuable it is for countries speaking the same language to cooperate on projects.

At the ICI conference in Monaco this year, a small book in French was being distributed to delegates: PPIU (Précis Pratique d’Infections en Urologie). It wasn’t until I got home that I discovered that this booklet edited by Professor Henry Botto included a chapter on interstitial cystitis by Professor Jean-Paul Boiteux. Zambon France, the distributor, kindly sent us a box of these books to distribute in Paris to French-speakers.

Florentina Ferreyra, president of the Mexican IC support group ACI-Mexico, made numerous new contacts from South and Central America at the conference via the IICPN Foundation booth. This will help her to set up a network of doctors and stimulate the formation of new support groups in Spanish-speaking countries.
i Florentina Ferreyra made numerous new contacts at the conference via the IICPN Foundation booth

Conference programme

The “highlights” selected here are of course items that were of particular interest to us as IC patients. The conference programme covered a wide range of topics.

ICS Terminology Course

The conference was preceded by two days of workshops and courses. Bearing in mind the recent deliberations on urgency, the ICS Terminology course was top of my list. Discussions on standard terminology in this interactive course (actually more of a workshop than a course) included a proposal to change the definition of ‘urgency’. The current definition is: “Urgency is the complaint of a sudden compelling desire to pass urine which is difficult to defer”. It is proposed to add to this: … “for fear of leakage”. In ICS Standard Terminology, this will effectively exclude IC/PBS from use of the term urgency.

Also discussed was use of the term ‘urge’, as in urge incontinence and urge to void. It was proposed (as already suggested by Christopher Chapple at the ICI conference in Monaco) that the term should be urgency incontinence. Urge to void should be replaced by urgent or compelling desire to void.

Another term under discussion was ‘nocturia’. The ICS definition of nocturia is: the complaint that the individual has to wake at night one or more times to void.

It was explained that in the case of nocturia each episode of voiding is preceded and followed by sleep. The note to the ICS definition states: The term nighttime frequency differs from that for nocturia as it includes voids that occur after the individual has gone to bed, but before he/she has gone to sleep; and voids which occur in the early morning which prevent the individual from getting back to sleep as he/she wishes. These voids before and after sleep may need to be considered in research studies, for example, in nocturnal polyuria. If this definition were used then an adapted definition of daytime frequency would need to be used with it. In the case of PBS/IC patients, the term nighttime frequency or something similar would be more appropriate since when IC patients go to bed they may get out of bed to go to the bathroom many times before they go to bed.

Now all of this may seem like playing around with words and in a clinical setting the terminology is not of major importance, but in a research setting or when drawing up criteria definitions have to be clear and understood by all. So before drawing up research criteria, consensus somehow has to be reached on the definitions of the terminology to be used.

Urgency Debate

This was followed the next day by a Debate on “What is Urgency?” But once again, the general impression was that these discussions focused on urgency exclusively in relation to incontinence. When a question was raised regarding the exclusion of IC/PBS, it was commented that urgency in IC/PBS is a psychological fear of not being able to find a toilet in time. However, many people may feel that this aspect is not confined to IC/PBS patients but that all patients with any kind of bladder problem involving frequency/urgency, including prostate patients, are afraid of not finding the next toilet in time.

It is perhaps interesting to include here in brackets the definition of urgency given in the Epidemiology of Interstitial Cystitis – Executive Committee Summary and Task Force Meeting Report (October 29, 2003):

(1b) “Urgency in IC patients differs from that experienced by patients with urinary incontinence. In IC patients, the urgency is driven by pain; in patients with incontinence, it is driven by their fear of losing control.”

By the end of the ICS Urgency Debate, it was becoming increasingly clear that urgency can be interpreted in numerous different ways by both doctors and patients and involves many different aspects. It would be interesting to know how the patients themselves would describe the sensation of urgency. But whatever the case, the one factor all the patients have in common is that they need to reach a toilet urgently, whether this is due to extreme pain, fear or risk of leakage or some other as yet undefined sensation of urgency.

Workshop on Understanding Urothelial Dysfunction: Pathophysiology and Novel Therapies This excellent workshop, chaired by Anthony Kanai and Christopher Fry, was basically intended to present a number of different mechanisms leading to urothelial cell dysfunction/damage, the impact of urothelial pathology on bladder function and an overview of novel therapies. Its aim was to focus on the barrier function of the urothelium and covered a range of topics including: 1. The role of uroplakins, tight junctions and the GAG-layer in the urothelial barrier (William de Groat), 2. The contribution of growth factors to urothelial dysfunction in interstitial cystitis (Lori Birder), 3. The role of membrane trafficking in urothelial disorders (Christopher Fry), 4. The mechanisms of bacterial and radiation-induced cystitis (Scott Hultgren), 5. The changes in urine storage mechanisms after disruption of the urothelial barrier (Anthony Kanai) and 6. Intravesical pharmacotherapy (Clare Fowler).
This exceptional workshop served to pull together the strings of all different aspects of the urothelium, giving a clear overall picture.

Webcasts ICS

Those who were unable to attend the ICS – and even those who were - can enjoy a number of the presentations in the form of webcasts produced by Prous Sciences and sponsored by Yamanouchi. The website is www.ttmed.com/urology/ICS2004. The three state of the art presentations may be of special interest to the IC/PBS movement: “Anatomical basis of perineal pain” by Professor Roger Robert from Nantes who has a special interest in pudendal neuralgia, “How to Evaluate Sexual Function in the Female?” by Jennifer Berman and “Functioning Imaging of Micturition control” by Clare Fowler. And there are many more presentations in these webcasts that you may find very worthwhile.

Satellite symposium 10 years of experience with Interstim® therapy
It was up with the Parisian lark to attend the Medtronic satellite symposium starting at 7.30 in the morning, chaired by Philip van Kerrebroeck. This was a symposium celebrating 10 years of experience with Interstim therapy. As Dr Steven Siegel explained, the first procedure of sacral nerve stimulation was in actual fact carried out way back in 1982 at the University of California.

Neuromodulation is today used for the treatment of chronic voiding disorders such as overactive bladder and urinary retention after other treatment has failed and before more invasive treatment (surgery) is considered. This therapy uses mild electrical pulses to continuously stimulate the sacral nerves (located in the lower back, just above the tailbone) which influence the pelvic floor, lower urinary tract – including the bladder - and the gastrointestinal tract. The system, sometimes known as a ‘pacemaker for the bladder’, is surgically placed under the skin. All procedures are reversible.

According to Professor Karel Everaert from Belgium, a positive effect has also been observed on bowel complaints such as faecal incontinence and constipation and on pelvic pain. Recent studies have examined the role of Interstim therapy in chronic pelvic pain syndrome (CPPS) and IC/PBS. Studies have indicated that it can lead to a significant decrease in pain in certain patients in addition to a reduction in frequency and nocturia. Professor Everaert concluded that while Interstim is a promising new treatment modality for IC/PBS, further investigation is needed to improve patient selection and to confirm its long-term efficacy.

A worldwide clinical study on the long-term efficacy, safety and quality of life results of sacral neuromodulation for the treatment of voiding dysfunction by Van Voskuilen and colleagues was also presented at Friday’s press briefing.


Discussed posters included two on the use of intravesical resiniferatoxin: one for the treatment of idiopathic detrusor overactivity and one for IC. The USA study into RTX and IC patients – reported on earlier this year – showed that although RTX was safe it was not found to be effective in a group of 163 patients with refractory IC. This study has been stopped, or at least for the time being. The theory looked good, but it just didn’t work in practice. Who knows, we may see resiniferatoxin popping up again in the future in some other form.

Studies would benefit from classification of patients

Bearing in mind the results of the above study and many others before, it would be useful if research in the coming years could be focused on classifying “IC/PBS” patients into more categories than at present (ulcer and non-ulcer) so as to enable better patient selection for studies and hopefully make treatment less of a hit and miss affair than is currently the case.

Jane Meijlink

updated 10.02.2006 14:58 © 2006-2018 International Painful Bladder Foundation (IPBF). All rights reserved.