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«INTERNATIONAL PAINFUL BLADDER FOUNDATION Interstitial Cystitis/ Bladder Pain Syndrome Interstitial Cystitis, Bladder Pain Syndrome, Hypersensitive ...»

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Interstitial Cystitis/

Bladder Pain Syndrome

Interstitial Cystitis, Bladder Pain Syndrome,

Hypersensitive Bladder, Hunner Lesion

Chronic Pelvic Pain, Associated Disorders

An overview of

Diagnosis & Treatment

Jane M. Meijlink

May 2016

International Painful Bladder Foundation 2014


This information brochure is published by the International Painful Bladder Foundation.

The International Painful Bladder Foundation is registered at the Chamber of Commerce Rotterdam, Netherlands, under number 24382693.

info@painful-bladder.org www.painful-bladder.org ISBN number: 90-810327-1-2 © 2006-2016 Jane M. Meijlink, Naarden Date of revised publication: May 2016 Interstitial Cystitis/Bladder Pain Syndrome: Diagnosis & Treatment IPBF Publication No. 1.

Editorial address:

Jane M. Meijlink Mahlerlaan 4 1411 HW Naarden Netherlands Email: ipbf@dds.nl The International Painful Bladder Foundation (IPBF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. The IPBF advises patients to consult their own physician before undergoing any course of treatment or medication.

Every effort has been made to ensure that the information provided is up-to-date, but no guarantee is made to that effect.

The International Painful Bladder Foundation does not necessarily endorse any of the commercial products or treatments mentioned in this publication.

No part of this brochure may be reproduced, translated or made public in any form or any means without prior consent in writing from the author and without stating the source. Requests should be addressed to: Jane M. Meijlink, jane@dds.nl International Painful Bladder Foundation 2014 3


Terminology and abbreviations used Chapter 1: What is interstitial cystitis/bladder pain syndrome (IC/BPS)?

Chapter 2: Impact on life.

Chapter 3: Brief historical overview.

Chapter 4: Diagnosis.

Chapter 5: Treatment.

Chapter 6: IC/BPS and associated disorders Chapter 7: Fatigue in IC/BPS patients: impact & coping


1. List of relevant confusable diseases and how they can be excluded or diagnosed

2. Diet modification

3. Questions to assess the possibility of an IC/BPS patient having associated disorders

4. Fatigue in IC/BPS patients References & further reading.

International Painful Bladder Foundation 2014 4


 Interstitial Cystitis: IC  Bladder Pain Syndrome: BPS  Painful Bladder Syndrome: PBS  Hypersensitive Bladder: HSB  Chronic Pelvic Pain: CPP  Chronic Pelvic Pain Syndrome: CPPS  Chronic non-bacterial Prostatitis/Chronic Pelvic Pain Syndrome: CP/CPPS  Urologic Chronic Pelvic Pain Syndrome: UCPPS  Hunner Lesion (formerly Hunner’s ulcer or Ulcerative IC) also known as Hunner Disease  Associated Disorders also known as Comorbidities or Non-Bladder Conditions  Ketamine Cystitis: KC, also known as Ketamine Associated Cystitis

–  –  –



A normal urinary bladder should not cause pain or hypersensitivity. Pain, irritation, discomfort or a feeling of pressure in and around the bladder, with a frequent and often urgent need to urinate can have many different causes. It may be related to the urinary tract, the genital tract, the bowel, nervous system or muscular system. It may be due, for example, to bacterial, viral or fungal infections, infestations, stones, benign or malignant tumours, endometriosis, systemic autoimmune disease, drugs or chemicals, and including more recently ketamine abuse. Table 1 on page 16 provides a summary of many possible causes of these symptoms.

However, if a thorough investigation has revealed none of these disorders, there is another possibility. Interstitial cystitis/bladder pain syndrome (IC/BPS), also known as painful bladder syndrome (PBS) or - particularly in East Asian countries - as hypersensitive bladder (HSB) and sometimes grouped under the collective heading of chronic pelvic pain (CPP), is a distressing, chronic bladder disorder of unknown cause, with persistent or recurrent symptoms of pain/hypersensitivity, irritation, discomfort or pressure related to the bladder and usually accompanied by a frequent and urgent, overwhelming need to urinate day and night. While the symptoms may resemble a urinary tract infection (cystitis), there is no infection to be seen in the urine and tests reveal no identifiable disorder that could account for the symptoms.

Currently two main types: with or without lesions

At the present time, two main types can be distinguished:

- the classic inflammatory type with Hunner lesion (formerly known as Hunner’s ulcer, or Ulcerative IC, sometimes also referred to today as Hunner Disease)

- the non-lesion type While symptoms may be similar, cystoscopic findings are different for these two types and the approach to treatment is also different. Further information is given under Chapter 4 Diagnosis and Chapter 5 Treatment.

Current research into subtyping (phenotyping) may lead to the identification of more subtypes.

What are the symptoms?

The characteristic symptoms of IC/BPS are:

–  –  –

 Pain, hypersensitivity, irritation, pressure, discomfort or other unpleasant sensation that may worsen as the bladder fills; urinating often alleviates the pain and may give a temporary sense of relief;

 Suprapubic pain or discomfort, pelvic pain (lower abdominal pain), sometimes extending to the lower part of the back, the groin and thighs;

 In women there may be pain in the vagina and vulva;

 In men, pain in the penis, testicles, scrotum and perineum;

 Both men and women may have pain in the urethra and rectum;

 Pain with sexual intercourse in both men and women (dyspareunia); pain on ejaculation in men;

 Pain may worsen or be triggered by specific foods or drinks or even medication;

 A frequent need to urinate (frequency), including at night (night-time frequency or nocturia);

 An often overwhelming, urgent need to urinate (urgency).

International Painful Bladder Foundation 2014 6

The pain or hypersensitivity may be experienced as discomfort, tenderness, irritation, burning or other unpleasant sensation in the bladder, or in the form of stabbing pain in or around the bladder, or stabbing or burning vaginal pain, or may simply be a feeling of pressure on or in the bladder or a feeling of fullness even when there is only a very little urine in the bladder. In many patients, the pain is relieved temporarily by urination, while some patients may also feel strong pain following urination. The pain or discomfort may be constant or intermittent. It may also be felt throughout the pelvic floor, including the lower bowel system and rectum. In some patients the pain may be very severe and debilitating. Other patients may have milder frequency with/without urgency and without a sensation of true pain. What they may experience, however, is a feeling of heaviness, fullness, discomfort or pressure or simply the feeling of having an irritated sensation in the bladder.

Sexual pain with intercourse is a typical feature in both men and women.

Urinary frequency means that a person needs to urinate more frequently than normal during the daytime and at night. However, this will also partly depend on how much a patient drinks, on the climate where the patient lives, how much the person perspires and on medication the patient may be taking which could have a diuretic effect. In IC/BPS, frequency may sometimes be very severe with some patients needing to urinate 60 times a day or more, but frequency is generally seen as being anything over approximately 8 times a day. However, this figure of 8 voids a day should only be seen as an approximation since the number of voids per day depends on the individual’s way of life and environment.

Frequency is by no means always related to bladder size. While some patients have a type of IC/BPS with a shrunken bladder with a scarred, stiff wall and a small capacity under anaesthesia, other IC/BPS patients with a normal-sized bladder may nevertheless have severe frequency due to hypersensitivity on filling. A typical feature of IC/BPS is the need to empty the bladder several or multiple times during the night. The amount of urine passed may be small, even just a few drops.

While a voiding diary can be useful to show frequency and the volume of urine passed, frequency can vary from day to day and week to week, depending on whether the patient’s symptoms are flaring or relatively calm.

Urinary urgency in IC/BPS is an overwhelming, urgent need to empty the bladder due to increasing pain or discomfort or other unpleasant sensation that becomes impossible to tolerate any longer, and may in some patients be accompanied by a feeling of malaise and/or nausea and great stress.

Some patients find that having to postpone urination leads to retention or difficulty in getting the flow started. The nature and cause(s) of this urgency sensation in IC/BPS patients are still not fully understood.

Who gets IC/BPS? Men, women and children, of all ages, worldwide!

As diagnosed at the present time, IC/BPS is mainly found in women (+ 80-90%). Approximately 10of IC/BPS patients are men who may in the past have been incorrectly diagnosed as having nonbacterial prostatitis (inflammation of the prostate gland) or prostatodynia (pain in the prostate gland). A complicating factor is that chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), also known as prostate pain syndrome, is clinically very similar to IC/BPS and the two conditions have many overlapping symptoms. However, this possibility of misdiagnosis in men may mean that more men may in fact have IC/BPS than hitherto thought and the percentage of male patients with IC/BPS may therefore be higher. A diagnosis of IC/BPS should be considered in men who have pain perceived to be related to the bladder. However, both CP/CPPS and IC/BPS can occur together!

International Painful Bladder Foundation 2014 7

IC/BPS is also found in children. However, since in the past the old NIDDK IC research criteria excluded children from studies, many doctors consequently thought that IC did not occur in children.

There has therefore been relatively little research or scientific literature on IC/BPS in children in the past two decades and some doctors are still hesitant to give a diagnosis of IC/BPS in a child. It can, nevertheless, occur in children of any age. Many adults with IC/BPS report that they had urinary symptoms in childhood or adolescence and needed to go to the toilet more frequently than their peers.

IC/BPS is found in all countries around the world and in all races. However, prevalence figures vary enormously from study to study and country to country and depend on what criteria and definitions have been used for diagnosis, what diagnostic methods have been used to reach the diagnosis and how big the population is in the study. The unfortunate result is that nobody can say with any degree of certainty at the present time how many people may have IC/BPS. Furthermore, current prevalence figures tend to bundle all patients with a painful, hypersensitive bladder together, without making any distinction between lesion/non-lesion subtypes.

At present, the only distinction usually made is between the so-called Classic IC with Hunner lesions and the non-lesion type. A relatively smaller percentage of patients (estimates vary from 10-50%) have Hunner lesions (Note: the old term was Hunner’s ulcer but this was a misnomer since these are not true ulcers. They are today usually described as lesions). However, while this Hunner type interstitial cystitis used to be considered rare, it is now believed that it may be more common than originally thought. Many researchers now believe that the classic type with lesions and the nonlesion type may be two different diseases. Further information on this is provided in Chapter 4 on Diagnosis. While many patients may have an inflammatory type of bladder condition, some do not and may form a subtype or phenotype.

How does IC/BPS start?

The symptoms may begin for no apparent reason, or sometimes following surgery, for example in the case of women following a hysterectomy or other gynaecological or pelvic operation, after childbirth or following a bacterial infection of the bladder or repeated infections. Onset may be very slow, building up over many years or it may be sudden and severe. Some patients recall having bladder problems in childhood or adolescence, needing to go to the toilet more frequently than others, long before they developed pain or hypersensitivity.

In the very early stages of the disease or in a mild form of IC/BPS, the symptoms may only occur in attacks known as "flares". This leads many patients and their doctors to think that it may be an infection (bacterial cystitis). If the patient fails to respond to antibiotic treatment, it is important for a urine culture to be carried out (not just dipsticks) in order to be absolutely sure that bacterial infection can be excluded.

However, the fact that a patient has IC/BPS does not mean that the patient never develops urinary tract infections (UTIs) in addition to their IC/BPS. An infection in a hypersensitive IC/BPS bladder can considerably exacerbate the IC/BPS symptoms, further irritating the already painful or hypersensitive bladder. In this situation, following confirmation of an infection, the IC/BPS patient should indeed be treated with a suitable antibiotic to clear up the infection.

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