Ipbf newsletter 2009 april

International Painful Bladder Foundation The IPBF is a voluntary non-profit organization for interstitial cystitis/ painful bladder syndrome
IPBF E-Newsletter,
Issue 16, April 2009
An IPBF update for IC/PBS patient support groups, country contacts, healthcare
professionals and friends around the world.
NIH/NIDDK NEW WEBSITE FOR ITS MULTIDISCIPLINARY APPROACH TO THE
STUDY OF CHRONIC PELVIC PAIN (MAPP) RESEARCH NETWORK
The NIH/NIDDK MAPP research project is now truly underway. Make sure you too
keep fully updated with the developments of this project by regularly visiting the new
MAPP website at http://www.mappnetwork.org.
Although this five-year, multi-million dollar, multi-centre, multi-disciplinary “MAPP
Research Network” is a US-based project funded by the National Institutes of Health
(NIH), it will undoubtedly have an impact on the IC movement worldwide in the
coming years. And this new website – intended for everyone, from patients to
professionals - will explain everything as it happens.
This is a whole new approach to the study of both IC/PBS and CP/CPPS. It concerns
a “systemic” (whole body) approach to the study of IC/PBS and CP/CPPS. The
researchers are going beyond simply looking at the organ (the bladder and the
prostate) and will now be investigating potential relationships between these two
urologic syndromes and other chronic disorders that are sometimes found in these
patients in addition to the IC/PBS and CP/CPPS, for example irritable bowel
syndrome, fibromyalgia and chronic fatigue.
As you will see on the MAPP website, the key focus areas for the research are:
- epidemiological studies
- urologic phenotyping
- non-urologic phenotyping
- neuroimaging/neurobiology
- biomarkers
- organ cross-talk/pain pathways
Details are given on this MAPP website of each of these key focus areas, what they
mean and how the MAPP project will address them.
The MAPP Research Network consists of six Discovery Sites which conduct the
research studies and two Core Sites which will coordinate data collection, analyse
tissue samples and provide technical support.
IPBF E-Newsletter, Issue 16, April 2009 1 EUROPEAN ASSOCIATION OF UROLOGY 24th Annual Congress
17-21 March 2009, Stockholm, Sweden
A full review of posters and presentations on Interstitial Cystitis /Painful Bladder
Syndrome and related topics presented at the EAU 2009 congress can be found on
the IPBF website at: http://www.painful-bladder.org/pdf/2009_EAU_Stockholm.pdf
Webcasts
This year, those who were unable to attend the EAU Annual congress in Stockholm
can still enjoy many of the presentations in the form of webcasts. The full list day-by-
day is available at: http://www.eaustockholm2009.org/nc/eau-webcasts/.
Congress newsletters
You don’t need to miss the congress newsletters either, since all four EAU congress
newsletters are also available online:
http://www.eaustockholm2009.org/congress-newsletter/
ESU COURSE 21: Chronic pelvic pain syndromes (CPPS) with special focus on
chronic prostatitis (CP) and painful bladder syndrome/interstitial cystitis (PBS/IC)
A link to the course outline and webcasts of three presentations given in this course
can be found at:
http://www.eaustockholm2009.org/index.php?id=99&P=&NW=&S=2234
The course webcasts begin with an interesting introduction on chronic pelvic pain and
the nature and mechanisms of (chronic) pain presented by Professor J.J. Wyndaele
from Belgium. This is followed by an excellent, clear and very understandable
presentation on chronic prostatitis by Professor J.C. Nickel from Canada covering the
definition, classification and etiology, diagnostic work up and treatment. The final
webcast presentation for this course by Professor JJ Wyndaele covers the definition,
classification and etiology, diagnostic work up and treatment of IC/PBS/BPS. It was
emphasized by Professor Wyndaele how important it is to exclude potentially
dangerous confusable diseases such as cancer. If the patient diagnosed with IC fails
to respond to any therapy, it is a good idea to re-assess the patient after 3-5 years to
see if anything was missed the first time round.
State-of-the-art presentation by Professor JC Nickel on Prostatitis - Optimal
Management 2009
This was another excellent presentation by Professor J.C. Nickel on prostatitis,
including his “snowflake hypothesis” with its UPOINT subcategories: Urinary
symptoms, Psychosocial (identifiable psychopathology), Organ specific (prostate or
bladder), Infection, Neurogenic/Systemic (associated conditions e.g. IBS,
fibromyalgia etc). Tenderness (of pelvic muscles). The snowflake hypothesis has
been validated for both CP/CPPS and IC/PBS. He discusses a clinical phenotypic
management strategy for chronic pelvic pain – the phenotypic approach to chronic
pelvic pain where each patient is a unique individual, emphasizing the need to
phenotype patients in a clinically meaningful way that can guide therapy.
This is particularly interesting to us in the IC/PBS world since precisely the same
applies to IC/PBS. We therefore look forward to publication in the coming months of
the study presented by Professors J.C. Nickel and D. Shoskes at the 6th Annual
Meeting of the Society for Urodynamics and Female Urology (SUFU) (25-28
IPBF E-Newsletter, Issue 16, April 2009 2 February 2009) on “Clinical Phenotyping of Interstitial Cystitis/Painful Bladder
Syndrome Patients and Correlation with Symptom Severity” (SUFU Poster # 46).
With CP/CPPS now being studied closely with IC/PBS in the MAPP research project,
this webcast is an ideal opportunity to update your knowledge in this field.
Webcast: http://www.eaustockholm2009.org/webcastplayer/?S=22916

Scientific posters and presentations
Details of these can be found in the full report on the IPBF website
http://www.painful-bladder.org/pdf/2009_EAU_Stockholm.pdf. Four of the poster
presentations were webcast and can be seen online.
4-6 JUNE 2009: ESSIC ANNUAL MEETING SWEDEN, INCLUDING SYMPOSIUM
ON HUNNER’S LESION (ULCER) AND TREATMENT OF BLADDER PAIN
The ESSIC annual meeting will be held at the Storan Theatre in Gothenburg
(Göteborg), Sweden, 4-6 June 2009. The first part of the programme is restricted to
members and the second part open to the public (with registration fee). The public
sessions will include a Symposium on Hunner’s lesion (ulcer) and Treatment of
Bladder Pain: a Practical Approach. Registration details are now available on the
ESSIC website: www.essic.eu.
N.B. A useful text on Hunner’s lesion (ulcer) can be found on the ESSIC website at:
http://www.essic.eu/Hunner_lesion.html
16-18 DECEMBER 2009: CONVERGENCES IN PELVIPERINEAL PAIN, FRANCE
A meeting on convergences in pelviperineal pain will be held 16-18 December 2009,
at the Cité des Congrès de Nantes in France. The honorary president is Professor R.
Robert. This conference will combine the annual meetings of PUGO (Pain of
UroGenital Origin), which is a special interest group of the International Association
for the Study of Pain (IASP), the ALS meeting (pelviperineal pain, diagnostics and
procedures), whose last meeting in Aix en Provence in January this year as you may
remember was affected by severe snowfall, and SIFUD PP (Société Interdisciplinaire
Francophone d’Urodynamique et de Pelvi Périnéologie. Preliminary information is
available on the website:
http://sites.google.com/site/convergencesppuk/. Those who are interested should
pre-register via: sifud-pp@orange.fr and they will be sent updated information
regarding registration.
IASP LAUNCHES REVAMPED WEBSITE
The International Association for the Study of Pain (IASP) has revamped its website
www.iasp-pain.org. A wealth of information on every aspect of pain is available here
to the general public if you click on Publications and Resources. It is well worth
exploring this website.
THE CLEVELAND IC SUPPORT GROUP REGIONAL MEETING FOR PATIENTS
USA

IPBF E-Newsletter, Issue 16, April 2009 3 The Cleveland IC Support Group "IC We Can Help Each Other" will be holding a
regional meeting on 3 May 2009, 12.00-14.00 hours, at Strongsville Recreation
Center, 18100 Royalton Road, Strongsville, OH 44136, USA. There will be a
discussion on IC and Alternative Treatments. Speakers will include author Catherine
M. Simone and Dr Ching-Yao Shi, IC researcher, Acupuncture, NAET and Chinese
Herbs. Attendance is free, but please notify by email:
IC_HeatherSchwarz@yahoo.com
NEW POLISH IC/PBS and OAB WEBSITE: www.pecherz.pl

There is now a website in Polish with detailed information for patients with overactive
bladder (OAB) and patients with IC/PBS at www.pecherz.pl. This website also
includes a forum for Polish-speaking patients.

OVERLAPPING CONDITIONS ALLIANCE USA

A new Overlapping Conditions Alliance has been set up in the United States,
comprising six independent non-profit patient advocacy organizations: the Chronic
Fatigue and Immune Dysfunction Syndrome Association of America, Endometriosis
Association, Interstitial Cystitis Association, International Foundation for Functional
Gastrointestinal Disorders, National Vulvodynia Association and the TMJ Association.
The aim of this new alliance is to promote the scientific, medical and policy needs of
those suffering from multiple chronic conditions. The new Alliance will promote
research into the underlying connection(s) between these coexisting conditions. As
part
www.OverlappingConditions.org.
INFORMATION ON SJÖGREN’S SYNDROME, AUTOIMMUNE DISEASES AND
MANY RELATED DISORDERS ON THE IPBF WEBSITE
Everyone involved with IC needs to be aware of the possibility of other disorders
occurring with IC/PBS. On the IPBF website you will find a section on associated
disorders, including a full text book, chapter by chapter, for both patients and
professionals, by Dr Joop P. van de Merwe, internist-immunologist from the
Netherlands.
This book concerns Sjögren’s syndrome, but also covers many other autoimmune
disorders and related conditions plus their diagnosis and treatment. You will see
chapters here, for example, on fatigue, fibromyalgia, nervous system disorders,
gastrointestinal disorders, urogenital disorders (including IC) and much more besides.
The chapters of this book are continually evolving and being regularly updated, with
new chapters being added. You can click on each chapter heading to download the
pdf file.
This book is an indispensable aid for those wishing to know more on not only
Sjögren’s syndrome but also the wide field of related disorders. Go to:
http://www.painful-bladder.org/pbs_ic_ass_dis.html.
CHAPTER ON IC/PBS IN MEN IN BOOK ON CP/CPPS EDITED BY DANIEL
SHOSKES, MD

IPBF E-Newsletter, Issue 16, April 2009 4 It has always been frustrating to discover that so little is to be found in the literature
on the subject of IC/PBS in males. It is therefore very welcome to find that chapter 15
of a book on Chronic Prostatitis/Chronic Pelvic Pain Syndrome edited by Daniel
Shoskes, MD is devoted to Interstitial Cystitis in Men: Diagnosis, Treatment, and
Similarities to Chronic Prostatitis written by Jonathan D. Kaye and Robert M. Moldwin.
This chapter includes sections on: definitions and demographics, quality of life,
similarities in clinical presentation between IC and CP, diagnosis and treatment. The
authors conclude that “Diagnosing and treating interstitial cystitis in men can prove to
be an exquisitely challenging undertaking”. This is rendered even more difficult due to
the striking clinical similarities between chronic prostatitis/chronic pelvic pain
syndrome and IC/PBS.
While clearly more research and more data will hopefully help to facilitate treatment
of this group of patients, this chapter will go a long way towards offering much
needed support to those treating these male patients, and indeed also to the patients
themselves and support groups. Highly recommended!
Chronic Prostatitis/Chronic Pelvic Pain Syndrome
Editor: Daniel A. Shoskes
Publisher: Humana Press (2008), pp: 278, ISBN 978-1-934115-27-5
UROLOGY TIMES: ABUSE & IC: LET’S NOT GET DISTRACTED FROM THE
MAIN ISSUES, BY UT CORRESPONDENT PENNY ALLEN
A recent issue of Urology Times (www.urologytimes.com) on 1 April, 2009 (Vol. 37,
No. 4) carried an analysis by UT correspondent Penny Allen of research on Abuse &
IC. Like a number of the experts she quoted, many of us in the IC world have been
deeply concerned in the past few years about the plethora of papers presented and
published on IC and Abuse following the presentation of a highly controversial paper
at the AUA annual meeting in 2006 on this topic. Questions are now being asked
about the nature, methods and accuracy of these studies and whether or not too
much time has been focused on this, thereby diverting the urologists’ attention away
from the real issues and from potentially useful research directions. It is suggested
that, on the basis of evidence from published studies, asking about past abuse does
not provide truly usable data to make the connection, only prospective studies can do
this. And these studies have only found a minimal relationship between abuse and
chronic pain disorders. This is found only in a minority of patients with true post-
traumatic stress disorder (PTSD). Furthermore, there is no good evidence that
therapy for PTSD resolves chronic pain.
Don’t miss this Urology Times article which can be read online at:
http://urologytimes.modernmedicine.com:80/urologytimes/issue/issueDetail.jsp?id=17
095
SELECTED NEW SCIENTIFIC LITERATURE
A continually updated selection of new scientific literature can be found on our
website: http://www.painful-bladder.org/pubmed.html. Most of these have a direct link
to the PubMed abstract. In the past year we have seen an increasing number of
scientific articles “In Press” being published early online (on the Journal website) as
“Epub ahead of print” sometimes long before they are published in the journals. While
abstracts are usually available on PubMed, the pre-publication articles can only be
read online if you have online access to that specific journal.
IPBF E-Newsletter, Issue 16, April 2009 5
Bladder outlet obstruction in painful bladder syndrome/interstitial cystitis.
Cameron AP, Gajewski JB. Neurourol Urodyn. 2009 Mar 19. [Epub ahead of print].
PMID: 19301413
According to the authors, obstructive symptoms such as slow stream, dribbling and
straining are often reported by painful bladder syndrome and interstitial cystitis
(PBS/IC) patients. They hypothesized that some patients with PBS/IC have an
associated measurable bladder outlet obstruction (BOO) secondary to dysfunctional
voiding and that those patients with more severe PBS/IC are more likely to have
BOO. In this retrospective chart review of female patients diagnosed with PBS/IC on
the basis of the NIDDK research criteria, they found that forty-eight percent of their
PBS/IC patients had BOO, and conclude that increasing severity of PBS/IC is
associated with higher voiding pressure.
Risk factors and comorbid conditions associated with lower urinary tract
symptoms: EpiLUTS
Coyne KS, Kaplan SA, Chapple CR, Sexton CC, Kopp ZS, Bush EN, Aiyer LP;
EpiLUTS Team. BJU Int. 2009 Apr;103 Suppl 3:24-32. PMID: 19302499

(Note: EpiLUTS is the study of the epidemiology of lower urinary tract symptoms
undertaken in the USA, the UK and Sweden).
This section of the study was aimed at exploring the risk factors and comorbid
conditions associated with subgroups of lower urinary tract symptoms (LUTS) in men
and women aged > or =40 years in three countries, using data from the EpiLUTS
study, as LUTS are common amongst men and women and increase in prevalence
with age. This large, cross-sectional, population-representative survey was
conducted via the Internet. The survey response rate was 59%. The final sample was
30,000 (men and women). The voiding + storage + postmicturition (VSPM) group
reported the highest rates of comorbid conditions for both men and women, and the
fewest were reported in the no/minimal LUTS and the postmicturition-only groups.
Increasing age was associated with increasing LUTS in men, but not in women.
Comorbid conditions significantly associated with the VSPM group were arthritis,
asthma, chronic anxiety, depression, diabetes (men only), heart disease, irritable
bowel syndrome, neurological conditions, recurrent urinary tract infection, and sleep
disorders. Risk factors, such as body mass index, exercise level and smoking, played
less of a role, except for childhood nocturnal enuresis, which was significantly
associated with most LUTS subgroups. The authors concluded that many comorbid
conditions and risk factors were significantly associated with LUTS among both men
and women. It is their opinion that further longitudinal investigations of the
associations noted here would help physicians to understand the pathophysiology of
LUTS and comorbid conditions, and provide clinical guidelines for patient
management of comorbid conditions sharing common pathophysiological pathways.
Status of international consensus on interstitial cystitis/bladder pain
syndrome/painful bladder syndrome: 2008 snapshot.
Hanno P, Dmochowski R. Neurourol Urodyn. 2009 Mar 3. [Epub ahead of print]
The Society for Urodynamics and Female Urology (SUFU) brought together thought
leaders from Europe, Asia, and the United States to Miami in 2008, and a broad,
structured discussion ensued which is the subject of this report. The authors report
that the most appropriate name of the disease remains an area of contention. This
IPBF E-Newsletter, Issue 16, April 2009 6 controversial issue was not addressed at this meeting. However, a final "definition" of
IC/BPS/PBS did result in substantial agreement among participants: an unpleasant
sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder,
associated with lower urinary tract symptoms of more than 6 weeks duration, in the
absence of infection or other identifiable causes. The authors suggest that the world
is moving towards a presumptive diagnosis based on history and physical
examination, and relying on invasive procedures for more complex cases. However,
this is by no means universally accepted, being more prevalent in the United States
and Asia than in Europe, according to the authors.
Assessment of patient outcomes following submucosal injection of
triamcinolone for treatment of Hunner’s ulcer subtype interstitial cystitis.
Cox M, Klutke JJ, Klutke CG. Can J Urol. 2009 Apr;16(2):4536-40. PMID: 19364425
In this article, the authors present their experience with management of patients with
the Hunner’s ulcer subtype of interstitial cystitis using intralesional submucosal
injection of corticosteroid. All patients underwent flexible cystoscopy and biopsy
confirming the presence of Hunner’s ulcer(s). Under general anesthesia, 10 ml of
triamcinolone acetonide (40 mg/ml) was injected in 0.5 ml aliquots into the
submucosal space of the centre and periphery of ulcer(s) using an endoscopic
needle. Patient symptoms and quality of life was assessed using two validated
questionnaires, the International Prostate Symptom Score (IPSS) and the Pelvic Pain
and Urgency/Frequency (PUF) symptom scale. Each questionnaire was administered
prior to therapy and 4 weeks postoperatively. Thirty patients with Hunner's ulcer
subtype IC underwent endoscopic submucosal injection of triamcinolone. PGIC
assessment (Physician's Global Impression of Change) showed 21 of 30 patients
(70%) to be substantially improved. No perioperative complications were noted. The
authors concluded that submucosal injection of triamcinolone is well tolerated in
Hunner’s ulcer IC. This treatment appears to significant improvement in symptoms
and quality of life based on responses from validated questionnaires administered
before and after therapy.

(Note: Triamcinolone is a corticosteroid used to treat arthritis pain and inflammation.)

Comparison of intravesical botulinum toxin A injections plus hydrodistention
with hydrodistention alone for the treatment of refractory interstitial
cystitis/painful bladder syndrome.
Kuo HC, Chancellor MB. BJU Int. 2009 Mar 30. [Epub ahead of print]. PMID:
19338543
This prospective, randomized study from Taiwan compared the clinical effectiveness
of botulinum toxin A (BoNT-A) injections followed by hydrodistention (HD) with only
HD in IC/PBS patients. A total of 67 refractory IC/PBS patients participated. 44
received suburothelial injections with either 200 U or 100 U BoNT-A followed two
weeks later by cystoscopic HD. The 23 patients in the control group received the
identical HD but no BoNT-A. They found that intravesical injections of BoNT-A
followed by HD produced significantly better clinical results than HD alone. There
was no significant difference between 100 U and 200 U BoNT-A in pain reduction or
increased bladder capacity. However, all patients including the control group were
simultaneously receiving baseline PPS and therefore it is possible that the
combination may have helped to produce the positive results.
IPBF E-Newsletter, Issue 16, April 2009 7 Terminology of Lower Urinary Tract Symptoms. Helpful or confusing?
Vishwajit S, Andersson KE. ScientificWorldJournal. 2009 Jan 18;9:17-22. PMID:
19151894
While an established standardized terminology is necessary for communication of
scientific information and for prevention of mistreatment and misdiagnosis, linguistic
ambiguity leads to much confusion. While the ICS Standardization Committee report
of 2002 endeavoured to produce uniform definitions for lower urinary tract disorders,
not everyone agrees with the definitions. The authors believe that it is natural and
desirable that all suggested definitions are subject to criticism and is important that
discussions for improvement of existing terminology continue. However, frequent
changes of definitions may have detrimental effect on research, diagnosis and
management of patients.
Breaking the Cycle of Pain in Interstitial Cystitis/Painful Bladder Syndrome
Toward Standardization of Early Diagnosis and Treatment Consensus Panel
Recommendations
Forrest JB, Mishell DR. J Reprod Med 2009;54:3–14
Chronic pelvic pain (CPP) affects about 15% of female adults in the United States.
The source of this pain in many women is the bladder, specifically interstitial
cystitis/painful bladder syndrome (IC/PBS). Despite the frequent occurrence of
IC/PBS as a cause of CPP, there currently are no universally accepted guidelines for
diagnosis and treatment of this disorder, and, consequently, many patients do not
receive appropriate treatment in a timely manner. In an effort to develop a rational
way to diagnose and treat patients with CPP, a panel of leaders in urology,
gynecology, urogynecology and general women’s health met to review recent
literature, reach consensus and formulate 2 algorithms, one for diagnosing and the
other for managing IC/PBS. This article reflects the results of that meeting
The full text of this article is available online:
http://www.reproductivemedicine.com/feature/2009/feature012009.php
[Clinical differential diagnosis of type III prostatitis and interstitial cystitis]
[Article in Chinese]
Liu TJ, Zhao MJ, Sha KF, Gao JZ. Zhonghua Nan Ke Xue. 2009 Feb;15(2):140-3.
PMID: 19323374
The purpose of this small study from Beijing was to investigate the differential
diagnosis of type III prostatitis and interstitial cystitis so as to improve the efficiency of
diagnosis and treatment of the two diseases, analyzing the characteristics of the two
diseases with regard to clinical symptomatology, urodynamics, prostatic fluid
microscopy, microbiology and treatment. The authors found that while the common
clinical characteristics of type III prostatitis and IC were discomfort or pain in the
subabdomen and/or pelvic floor, there were also clear differences. In IC,
subabdominal pain increased increased as the bladder filled and was relieved by
voiding. In these patients prostatic fluid was normal and cultures were negative.
These patients responded to behavioural therapy, resiniferatoxin, sodium
hyaluronate and hydrodistension under anaesthesia. Patients with type III prostatitis
(with white blood cells > 10/HP or < or = 10/HP in the prostatic fluid and negative
culture) did not respond to the therapies that were effective in the IC patients. The
authors concluded that although clinically confusable, type III prostatitis and IC can
be differentiated from each other.
IPBF E-Newsletter, Issue 16, April 2009 8 Herpes simplex virus vector-mediated gene delivery for the treatment of lower
urinary tract pain.
Goins WF, Goss JR, Chancellor MB, de Groat WC, Glorioso JC, Yoshimura N. Gene
Ther. 2009 Apr;16(4):558-69. PMID: 19242523
IC/PBS involves either increased and/or abnormal activity in afferent nociceptive
sensory neurons. Pain symptoms in IC/PBS patients are often very difficult to treat.
Some drugs have a limited palliative effect, but give some IC/PBS patients no relief
whatsoever. Opiate narcotics have been used but have multiple unwanted side
effects and when used chronically may lead to dependence or tolerance
necessitating drug escalation. This research group consequently developed a gene
therapy strategy that could potentially alleviate chronic pelvic pain using the herpes
simplex virus-directed delivery of analgesic proteins to the bladder. Gene therapy
represents a new and potentially promising way of delivery anti-nociceptive products
directly to the bladder or to the bladder afferents involved in signalling pain.
Prevalence of Painful Bladder Syndrome (PBS) symptoms in adult women in
the general population in Japan.
Inoue Y, Mita K, Kakehashi M, Kato M, Usui T. Neurourol Urodyn. 2009 Mar
3;28(3):214-218. PMID: 19260086
This study was aimed at clarifying the prevalence of PBS symptoms in adult women
in the general population in Japan. The study was carried out using an Internet
survey. A previous study had estimated prevalence at 4.5 per 100,000 women
visiting urological outpatient departments. This was low in comparison with Europe
and then USA. This new study, however, indicated that the prevalence of PBS
symptoms in Japan is the same as that in Europe and the United States, indicating
that this prevalence does not differ among races. The findings also suggest that there
may be more young people in Japan suffering from PBS symptoms than hitherto
suspected.
Paediatric painful bladder syndrome/interstitial cystitis: diagnosis and
treatment.
Sea J, Teichman JM. Drugs. 2009;63(3):279-96. PMID: 19275372
This is a rare review on PBS/IC in children. Until now, there have been few reports
and these are mainly from older literature. The old NIDDK criteria excluded all those
< 18 years from diagnosis and may be seen as the main reason for the lack of data
on IC in children. Furthermore, there are no available randomized, blinded
therapeutic trials for paediatric PBS/IC. The lack of data on outcomes of paediatric
PBS/IC makes firm recommendations problematic. However, symptoms in children
appear to be similar to those in adults and the most common paediatric presentation
is urinary frequency, with abdominal pain also commonly seen (up to 88% of affected
children). Enuresis may also be a presenting complaint. The authors note that,
according to Held PJ and colleagues in 1990, observations of adult patients indicated
that approximately 25% of adults with PBS/IC reported having had chronic urinary
tract problems as a child or that their symptoms started in childhood, gradually
increasing in severity. Management of paediatric PBS/IC is similar to that of adult
patients with dietary, lifestyle and pharmacological therapy, but the lack of data on
outcomes of children with PBS/IC who have been treated with pharmacological
agents means that it is problematic to make any firm recommendations.
IPBF E-Newsletter, Issue 16, April 2009 9 The spectrum of eosinophilic cystitis in males: case series and literature
review.
Popescu OE, Landas SK, Haas GP. Arch Pathol Lab Med. 2009 Feb;133(2):289-94.
PMID: 19195972
Eosinophilic cystitis (EC), a rare condition, is of interest since it is a confusable
disease with symptoms closely resembling those of IC. Like IC, EC has a strong
female predominance and may go unrecognized in males. EC represents a response
to a variety of agents and may often be overlooked. It is characterized by strong
eosinophilic infiltrate in the acute phase and fibrosis in the chronic phase. Because
clinical and imaging studies are not specific, a high index of clinical suspicion is often
crucial for diagnosis. Accurate diagnosis is critical since the treatment for EC is
unique and curative in most individuals. Preferred first-line treatments are NSAIDS
and antihistamines. In cases that fail to respond, it is recommended to try
corticosteroids, cyclosporine and azathioprine. However, if medical management fails,
cystectomy may be necessary. The full article can be read free online at:
http://arpa.allenpress.com/pdfserv/10.1043%2F1543-2165-133.2.289
Epigenetic reprogramming: a possible etiological factor in bladder pain
syndrome/interstitial cystitis?
Elgavish A. J Urol. 2009 Mar;181(3):980-4. PMID: 19150095
This article explores the possibility that epigenetic reprogramming may play a role in
the etiology of IC. The author postulates that epigenetic reprogramming mechanisms
in the bladder may provide an explanation for abnormalities in the uroepithelium,
mast cells and nerve cells in IC patients, as well as perpetuating
such changes in the absence of the signal or insult that may have triggered
them in the first place. The article also provides a new experimental paradigm for
exploring the etiology of IC. Data supporting this hypothesis would provide a rationale
for new diagnostic as well as treatment options for IC.
Mucosal muscarinic receptors enhance bladder activity in cats with feline
interstitial cystitis.
Ikeda Y, Birder L, Buffington C, Roppolo J, Kanai A. J Urol. 2009 Mar;181(3):1415-22.
PMID: 19157447
Past research has shown domestic cats to suffer from feline interstitial cystitis (FIC)
which has much in common with IC in humans. In the present study, the authors
examined Ca2+ transients in the bladder wall of domestic cats diagnosed with
naturally occurring FIC. Optical mapping revealed that FIC bladders had significantly
more spontaneous Ca2+ transients in the mucosal layer than control bladders.
Optical mapping also demonstrated that FIC bladders were hypersensitive to a low
dose of the muscarinic receptor agonist arecaidine when the mucosal layer was
intact. There was a significant decrease in this hypersensitivity when they used
bladder strips without mucosa. They concluded that a role may possibly be played in
FIC symptoms by changes in the activity and sensitivity of muscarinic receptors in the
mucosa, resulting in enhanced contractions of the smooth muscle.
Increased vascular endothelial growth factor expression in patients with
bladder pain syndrome/interstitial cystitis: its association with pain severity
and glomerulations.
IPBF E-Newsletter, Issue 16, April 2009 10 Kiuchi H, Tsujimura A, Takao T, Yamamoto K, Nakayama J, Miyagawa Y, Nonomura
N, Takeyama M, Okuyama A.BJU Int. 2009 Mar 4. [Epub ahead of print]. PMID:
19298410
This study examined angiogenic profiles in IC bladders with the aim of evaluating the
relationship between these profiles and associated clinical features including pelvic
pain and glomerulations. They concluded that there is increased vascular endothelial
growth factor (VEGF) and immature vascularization in IC patients and that VEGF
expression is associated with the level of pain described by patients. The authors
also concluded that VEGF might contribute to pain and promote the formation of
immature vessels. The increase in immature vascularization might play a role in
glomerulations seen in IC patients.
Differential expression of functional cannabinoid receptors in human bladder
detrusor and urothelium.
Tyagi V, Philips BJ, Su R, Smaldone MC, Erickson VL, Chancellor MB, Yoshimura N,
Tyagi P. J Urol. 2008 Apr;181(4):1932-8. PMID: 19237176
In this study, the expression of functional cannabinoid 1 and 2 receptors in bladder
detrusor muscle and urothelium were examined. Their findings suggest a
physiological role of cannabinoid 1 and 2 receptors in the human bladder and confirm
the presence of functional cannabinoid 1 and 2 receptors in the human bladder which
could potentially be a useful target for drugs to control the symptoms of IC.
Prevalence and correlates of painful bladder syndrome symptoms in Fuzhou
Chinese women.
Song Y, Zhang W, Xu B, Hao L, Song J. Neurourol Urodyn. 2009;28(1):22-5. PMID:
18671294
In this study which once again illustrates the rapidly growing interest in PBS/IC in
China, the authors conducted a random, large-scale survey of 3% of the registered
female population aged over 20 years of age in Fuzhou in China (population at the
time of the study was 200,203), based on a two-part validated Bristol Lower Urinary
Tract Symptoms questionnaire. 4684 women with evaluable data (77.2%) were
included in this study. They found the prevalence of PBS symptoms Fuzhou Chinese
women to be 0.98%. They concluded that the prevalence of PBS symptoms in
Chinese women is similar to those of women in the West. Their study also indicated
that parity >2, diabetes mellitus and smoking are potentially correlated with PBS
symptoms. The authors state that one of the limitations of their study was that the
PBS symptoms were self-reported without subsequent clinical diagnosis. However,
they feel that the strength of their survey was that a large population from a whole
community was sampled and that the response was good.
Increased Startle Responses in Interstitial Cystitis: Evidence for Central
Hyperresponsiveness to Visceral Related Threat.
Twiss C, Kilpatrick L, Craske M, Buffington CA, Ornitz E, Rodríguez LV, Mayer EA,
Naliboff BD. J Urol. 2009 Mar 13. Epub ahead of print. PMID:19286199
This study examined acoustic startle responses in female IC/PBS patients and
healthy controls during application of muscle stimulation electrodes to the lower
abdomen overlying the bladder. Compared to the controls, the patients showed
significantly greater startle responses during non-imminent threat conditions, while
both groups showed similar robust startle potentiation during imminent threat
conditions. Higher rates of anxiety and depression symptoms in the patient group did
IPBF E-Newsletter, Issue 16, April 2009 11 not account for the group differences in startle reflex magnitude. The authors believe
that the results support the hypothesis that the observed abnormality may be
involved in the enhanced perception of bladder signals associated with IC/PBS.
A NEW GUIDED IMAGERY CD 2009 NOW AVAILABLE FROM BEAUMONT’S
WISH PROGRAMME, USA
Guided imagery to enhance healing, for women with pelvic pain, interstitial
cystitis or vulvodynia.
Following the success of their first CD, a new 2009 Guided Imagery CD is available
from Beaumont’s WISH Program. The CD has two tracks, Rest & Relax – basic
relaxation for anyone; and Soothing Shore – specific to women with pelvic pain,
interstitial cystitis or vulvar pain. Price $15. The WISH Programme is Beaumont
Women’s Initiative for Pelvic Pain and Sexual Health. Please contact the following
address to order:
Donna Carrico NP, MS, The WISH Progra, Beaumont Hospital, Royal Oak, Michigan, USA,Phone (in
the US): 248-551-8422, Fax (in the US): 248-551-2615

UPCOMING EVENTS 2009:
American Urological Association (AUA) annual conference
25-30 April 2009, Chicago, USA
The Cleveland IC Support Group "IC We Can Help Each Other"
3 May 2009, 12.00-14.00 hours
Strongsville Recreation Center, 18100 Royalton Road, Strongsville, OH 44136, USA
Eurordis Membership Meeting
8-9 May 2009, Athens, Greece
ESSIC Annual Meeting
4-6 June 2009, Göteborg, Sweden
World Continence Week (organized by the International Continence Society)
22-28 June 2009
International Urogynecological Association (IUGA)
Annual meeting 2009
16-19 June 2009, Villa Erba, Como, Italy
International Continence Society (ICS)
39th Annual Meeting 30 September - 4 October 2009, San Francisco, USA
10th International Symposium on Sjögren's Syndrome
1-3 October, 2009, Brest, France.
30th Congress of the Société Internationale d’Urologie (SIU)
1-5 November 2009, Shanghai, China
Convergences in Pelviperineal Pain (including IASP/PUGO meeting)
16-18 December 2009 Cite des Congres de Nantes (France)
A more detailed list of conferences and events with contact addresses and websites
can be found on our website under “Calendar”.
DONATIONS AND SPONSORING – THE IPBF NEEDS YOUR HELP TO
CONTINUE ITS INTERNATIONAL PATIENT ADVOCACY AND AWARENESS
CAMPAIGN AROUND THE GLOBE IN 2009.

IPBF E-Newsletter, Issue 16, April 2009 12 The voluntary, non-profit IPBF is entirely dependent on sponsoring and donations to
be able to continue to carry out its projects and international advocacy and activities.
All donations to our global work will be most gratefully received. The IPBF has
fiscal charitable status in the Netherlands.
We would like to take this opportunity of thanking Astellas Pharma bv, Oxyor bv,
Bioniche Pharma Group Ltd and private donors for their greatly appreciated financial
support for our foundation, projects, patient advocacy, website and newsletters for
the year 2009.
The Board of the
International Painful Bladder Foundation (IPBF)
The IPBF is an associate member of the International Alliance of Patients’ Organizations (IAPO)
www.patientsorganizations.org and the European Organization for Rare Diseases (EURORDIS)
www.eurordis.org.
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, patient information 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.

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2009 International Painful Bladder Foundation
IPBF E-Newsletter, Issue 16, April 2009 13

Source: http://www.painful-bladder.org/pdf/2009_04_Newsletter.pdf