IPBF: who are we ?

site map  
interstitial cystitis &
bladder pain syndrome (IC/BPS)
Hunner lesion  
hypersensitive bladder  
other pelvic pain conditions  
overactive bladder syndrome  
associated disorders  
the urinary tract: how it works  
news & reviews  
literature: selected topics  
IPBF newsletters  
IPBF publications  
information in other languages  
glossary of terms: A-Z  
information for professionals  
books, videos, CDs  
how to start and run a support group  
global IC/BPS support groups, contact persons and related organizations  
useful links  
disclaimer & copyright  


IPBF Newsletter June 2006    
International Painful Bladder Foundation

The IPBF is a voluntary non-profit organisation


Dear PBS/IC patient support groups, country contacts, healthcare professionals and friends around the world,
The non-profit International Painful Bladder Foundation is slowly but surely building up its executive and medical advisory boards. We have pleasure in announcing that Dot Milne from New Zealand, not only a registered nurse running a clinic for PBS/IC patients but also a patient herself and founder/chairman of the New Zealand support group, has joined the executive board, bringing the board to five people. We have a medical advisory board of currently fourteen doctors with a wide range of expertise and a medical webmaster. With extensive interaction between the boards, this active and entirely voluntary team is already doing a great job in raising awareness and updating knowledge of PBS/IC around the world and hopes to be able to do even more in the future.
Upcoming NIDDK PBS/IC Symposium October 2006 – Frontiers in PBS & IC

The NIDDK has announced the details of its 2006 International Symposium: Frontiers in Painful Bladder Syndrome and Interstitial Cystitis. The symposium will be held 26-27 October 2006 at Bethesda Marriott, 5151 Pooks Hill Road, Bethesda, MD 20814, USA. Please save the date! For information please contact: Michelle Watson, The Scientific Consulting Group Inc, telephone: 301-670-4990, fax: 301-670-3815, email: mwatson@scgcorp.com.

Meeting website: http://www.niddk.nih.gov/fund/other/niddkfrontiers.

This symposium will focus on the current state of research and clinical treatments, both in the USA and internationally, with a look towards future frontiers in this field. The aim is to expand scientific awareness of PBS and IC and their treatment, to provide a forum for discussion of the definition and etiology of PBS and IC, and to exchange information and ideas on current and contemplated research. It will include plenary talks, selected short talks and a poster session. Poster abstract submissions should be made by 1 September 2006.

American Urological Association annual conference 20-25 May 2006: record number of PBS/IC presentations

PBS/IC continued to be a hot topic this year with a record number of presentations at the AUA annual conference in Atlanta. Posters, courses, press briefing, society meeting sessions and an excellent video of a cystocopy. Much basic research is in progress and a number of potential new drugs under development. There are as yet no new drugs available universally yet, but a new version of the Interstim neuromodulation device is now available, known as Interstim II. Botulinum toxin-A looks as though it may possibly have a beneficial effect on pain as well as urgency/frequency. It was hinted that although trials with Resiniferatoxin and PBS/IC patients were unsuccessful, RTX may not yet be written off.

Attention is at long last starting to be paid to the need for affordable treatment around the world. If you are using successful affordable treatments, please let us know the details: info@painful-bladder.org. You may be able to help others.

Terminology and definition issues now urgently need to be solved. Not only was a confusing variety of terminology being used in Atlanta, it was also evident that there are many different concepts as to how PBS/IC should be defined, with wide variations in diagnostic approaches.

We took advance of a Press session to talk Dr Anthony Atala on Tissue Engineering in relation to the bladder. Despite sensational reports in the worldwide press earlier this year following publication in the Lancet of an article on the amazing use of autologous engineered tissue for augmentation cystoplasty in a number of young patients with spina bifida, tissue engineering is not yet likely to be usable for PBS/IC patients for some time to come and full replacement bladders are at least a decade away in human patients. However, according to Dr Atala, animal experiments with whole bladder replacement are currently in progress. We are entering a new era of medical science.

Full report AUA: Read our full report on the AUA Atlanta PBS/IC presentations and posters and bladder tissue engineering on our IPBF website:

ICICJ 23-25 March 2007

During the meeting of the Society for Basic Urologic Research in Atlanta, Dr Naoki Yoshimura announced that the 2nd ICICJ international consultations on PBS/IC would be held in Kyoto Japan, 23-25 March 2007.

ESSIC Meeting

The European Society for the Study of IC and PBS (ESSIC) held its annual meeting in London this month. A report on the meeting and consensus reached will be published in due course. Website: www.essicoffice.org. A membership application form is available on the website.

PBS/IC Symposium held in Taiwan

The Taiwanese Continence Society organised the Taipei Interstitial Cystitis Forum 2006 on 22 April this year at the Grand Formosa Regent Taipei and was chaired by Alex T.L. Lin MD, president of the Taiwanese Continence Society. The speakers from a large number of Asian countries included Philip Hanno MD from the USA. According to Dr Lin, “the forum achieved its goals: expanding our knowledge on PBS/IC, sharing clinical experiences among Asian specialists and paving the way for future PBS/IC meetings and workshops in the Asian Pacific region.”  For further information, see conference report on UroToday website by Philip Hanno MD: http://www.urotoday.com/287/conference_reports/tcs/1607/.

International Symposium on Sjögren’s Syndrome

The International Symposium on Sjögren’s Syndrome was held in Washington DC, USA 27-29 April, hosted by the American Sjögren’s Syndrome Foundation (www.sjogrens.org) and chaired by Dr Philip Fox. Many thanks are due to Kathy Hammitt and the SSF team for all their hard work in organising this event which is held approximately every 3 years and attended by doctors and researchers in this field from around the world. This is a multidisciplinary task force since SS can affect every system in the body, although best known for the hallmark symptoms of dry, irritated eyes and dry mouth.

Since it has become increasingly evident in recent years that some PBS/IC patients have PBS/IC plus Sjögren’s syndrome and that some Sjögren’s patients have lower urinary tract symptoms in the form of either overactive bladder or PBS/IC symptoms, I attended this meeting so as to be able to gain some idea how much attention is being paid to bladder problems in this group of patients and to report back.

It was therefore slightly alarming to find relatively little interest in lower urinary tract symptoms in Sjögren’s syndrome on the part of rheumatologists. When speakers were discussing systemic symptoms, the urinary tract seemed to stop at the kidneys. Only two speakers from Australia touched briefly on the subject of the bladder. It was evident that although we have now succeeded in drawing the attention of many urologists around the world to the possibility of PBS/IC being associated with autoimmune diseases, we now need to increase awareness on the part of rheumatologists to the possibility of PBS/IC or OAB occurring in patients with Sjögren’s Syndrome. This is important so as to ensure that treatment is coordinated and that medication is not given for the symptoms of one which exacerbates symptoms in the other. A typical example is the use of anticholinergics for bladder symptoms (particularly OAB, but also sometimes PBS/IC) which cause dry mouth in normal people, let alone patients with SS.

A patient meeting was held parallel with the symposium and the IPBF offered to provide Sjögren’s syndrome patient support groups with information on PBS/IC if required.

A full report on this symposium is available on our website:


The next international symposium on Sjögren’s syndrome will be held in Brest, France in 2009.

Detailed information on all aspects of Sjögren’s syndrome, as well as specifically on the combination SS + PBS/IC, is available on our website under Associated Disorders:


New Scientific literature

A selection of new scientific literature is available on our website with links to PubMed abstracts where available:


  • CLINICAL ASPECTS AND SURGICAL TREATMENT OF URINARY TRACT ENDOMETRIOSIS: OUR EXPERIENCE WITH 31 CASES. Alessandro Antonelli, Claudio Simeone, Danilo Zani, Tazio Sacconi, Gianfranco Minini, Emma Canossi, Sergio Cosciani Cunico. European Urology 49 (2006) 1093-1098 + Editorial Comment

A very useful informative update on endometriosis in the bladder. As Mete Cek MD points out in the editorial comment (page 1097):”Endometriosis of the urinary tract poses a difficult problem for urologists as until recently it has been infrequently diagnosed and in all probably overlooked. Bladder involvement presents with irritative symptoms in more than 70% of patients, which indicates that this condition should be part of the differential diagnosis of interstitial cystitis.” However, it should also be added that endometriosis of the bladder can also occur simultaneously with PBS/IC.

Urogenital schistosomiasis
  • EAU GUIDELINES FOR THE MANAGEMENT OF UROGENITAL SCHISTOSOMIASIS. Karl-Horst Bichler. Ilya Savatovsky and the member of the Urinary Tract Infection (UTI) Working Group of the guidelines Office of the European Association of Urology (EAU): Kurt G. Naber (Chairman), Michael C. Bishop, Truls E. Bjerklund-Johansen, Henry Botto, Mete Cek, Magnus Grabe, Bernhard Lobel, Juan Palou Redorta. European Urology 49 (2006) 998-1003.

Schistosomiasis (bilharziasis) affects more than 100 million people worldwide. It can affect the urinary tract including the bladder and should be included among diseases to be excluded when diagnosing PBS/IC in countries where it is endemic or if patients have travelled to these countries. The EAU Guidelines for the management of urogenital schistosomiasis provide a clear overview of this disease, its diagnosis and management.

M2 and M3 Muscarinic Receptors
  • LOCALIZATION OF M(2) AND M(3) MUSCARINIC RECEPTORS IN HUMAN BLADDER DISORDERS AND THEIR CLINICAL CORRELATIONS. Mukerji G, Yiangou Y, Grogono J, Underwood J, Agarwal SK, Khullar V, Anand P. J Urol. 2006 Jul;176(1):367-373.

An interesting study into the cellular localization of muscarinic subtypes 2 and 3 in the human bladder and any changes in overactive and painful bladder syndromes related to measures of clinical dysfunction. The results suggest a potential role in pathophysiological mechanisms and the therapeutic effect of anti-muscarinic agents.

  • BOTULINUM A TOXIN INTRAVESICAL INJECTIONS IN THE TREATMENT OF PAINFUL BLADDER SYNDROME: A PILOT STUDY. Giannantoni A, Costantini E, Di Stasi SM, Tascini MC, Bini V, Porena M. European Urology 2006 Apr;49(4):704-9.

A pilot study using botulinum toxin A (BTX-A) with 14 patients (12 women, 2 men) with painful bladder syndrome. According to the authors, BTX-A intravesical injections are effective in the short-term management of painful bladder syndrome. Bladder pain and frequency were reduced. 2 patients reported incomplete bladder emptying.

  • Botox – EUT May 2006

For those seeking background information about Botulinum Toxin (BTX), an article in European Urology Today (EUT), May 2006 by Christopher Chapple MD on “BOTULINUM TOXIN FOR DETRUSOR OVERACTIVITY – IS THIS THERAPY THE ANSWER TO ALL OUR PROBLEMS?” provides a clear explanation of BTX, what it is and how it is currently being used to improve bladder function. This can be downloaded from the EAU website”

www.uroweb.org/files/uploaded_files/EUT 2006 May.pdf
page 21

New books
  • Because You Care – Exploring the Unique Intimacy Issues of People with Interstitial Cystitis

New booklet by ICA on sexual intimacy issues for PBS/IC patients.

While a few years ago PBS/IC patients were often reticent and too embarrassed to seek help concerning the sexual intimacy problems caused by PBS/IC, they are now speaking out and insisting on practical information. This new 40-page booklet from the ICA fulfils precisely this need. It is not only a valuable source of practical, down-to-earth information for patients, but also for health professionals who can thereby gain a better insight into the problems of their patients in relation to sexual issues and PBS/IC. It can be ordered from the Interstitial Cystitis Association (ICA) website:


  • A Seat on the Aisle, Please! The essential guide to urinary tract problems in women

A book from the USA with clear, frank and sympathetic advice from Elizabeth Kavaler, MD who was signing copies of her book at the AUA conference exhibition in Atlanta. Urinary tract disorders cause both physical and emotional distress and can be very isolating for the women who suffer from them. This book will help these women identify and understand these conditions and play a more informed and active role in seeking help.

Author: Elizabeth Kavaler, MD

Published by: Copernicus Books/Springer Science+Business media

ISBN 0-387-95509-7

  • European Association of Urology Nurses: Good Practices in Health Care – “Intermittent Catheterization”

Although written for urology nurses, this booklet on standard practice for Intermittent Catheterization for men, women and children is a useful source of information for anyone – patients, support groups or professionals – involved in intermittent catheterization. Can be downloaded from the EAU website:


Useful website on autoimmune diseases

This is part of the National Institute of Allergy and Infectious Diseases website. In the Health and Science topics section, you can find information about autoimmune diseases. Useful for those who would like to understand more about this topic, particularly those with PBS/IC in combination with an autoimmune disease. If you go to the section home page: www.niaid.nih.gov/publications/, you can find links to other relevant topics eg: allergies.

Patient support group update
  • Austria

    The patient support group in Austria has a new chairman Brigitte Annerl who recently took over from the retiring chairman Elke Hufnagl.
  • United Kingdom

    The British Cystitis and Overactive Bladder Foundation (COB Foundation) has a new development manager Edward Zawisza. The charity also has a new-look website.
  • A global list of non-profit support groups, foundations and country contacts for PBS/IC and associated disorders can be found on our website:




  • 26-27 October 2006
    International Symposium: Frontiers in Painful Bladder Syndrome & Interstitial Cystitis, Bethesda, MD, USA
  • 16-20 November 2006
    LVII Congreso Nacional de Urologia, Puerto Vallarta, Jalisco, Mexico (with PBS symposium)
  • 27 November-1 December 2006
    International Continence Society Annual Conference, Christchurch, New Zealand (with PBS/IC workshop)


  • 7-10 February 2007
    Urological Society of India
    annual conference, Patna, India (with PBS symposium)
  • 21-24 March 2007
    European Association of Urology
    (EAU) annual congress, Berlin, Germany
  • 23-25 March 2007
    International Consultations on PBS/IC, Kyoto, Japan
A more detailed list of conferences with contact addresses and websites can be found on our website under “Calendar”.
Donations and sponsoring
The voluntary, non-profit IPBF is entirely dependent on sponsoring and donations to be able to carry out its projects. All donations to our valuable worldwide work will be most gratefully received.

With best wishes

Jane Meijlink

Chairman IPBF
On behalf of the Executive Board
International Painful Bladder Foundation
Burgemeester Le Fevre de Montignylaan 73
3055 NA

e-mail: info@painful-bladder.org



If you do not wish to receive this newsletter in future, please notify the International Painful Bladder Foundation: info@painful-bladder.org


© 2006 IPBF

The International Painful Bladder Foundation does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. Information provided in IPBF emails, newsletters and website is not medical advice. The IPBF recommends patients to consult their own physician before undergoing any course of treatment or medication.

The IPBF endeavours to ensure that all information it provides is correct and accurate, but does not accept any liability for errors or inaccuracies. This message and any files transmitted with it may contain confidential information and is solely intended for the addressee(s). Any unauthorized disclosure or actions taken in reliance on it are forbidden. If you have received this message in error, please delete it and notify the sender.

updated 29.05.2007 13:58 © 2006-2019 International Painful Bladder Foundation (IPBF). All rights reserved.