INTERSTITIAL CYSTITIS IN INDIAA SIMPLE PRACTICAL APPORACH
NAGENDRA MISHRA, MD
CONSULTANT UROLOGIST
Jivraj Mehta Hospital, Ahmedabad, India
nagendraad1@yahoo.com
Interstitial cystitis (IC) is a chronic, inflammatory disorder of the urinary bladder
characterized by variable degrees of bladder pain, urinary frequency and urgency. It is
more common in women. IC is a clinical entity not well defined poorly understood,
inadequately treated and extraordinary bothersome. The aware ness about IC is
increasing in INDIA. When I was trained in urology some 18 years back it was believed
that IC is a disease of western world and does not exist in INDIA. The symptoms of IC
are very much similar to tuberculosis and all the patients of IC were being treated as
tuberculosis of genitourinary symptoms. My tryst with IC started when some of the
patients diagnosed as tuberculosis and adequately treated did not respond . I did
augmentation cystoplasy in one of these patients for thimble bladder and realized that the
patient did not have thick fibrous thimble bladder but some other pathology. This is how I
made my first diagnosis of interstitial cystitis I have around 150 patients of IC . In INDIA
male to female patient ratio is 1:2.
I did an international survey on IC in 2002 with Jane Meijlink from Netherlands.
Questionnaire containing 24 questions was sent to urologist all over the world by email.
We had 151 responses from 32 countries which proved that IC is a global disease. The
surprising fact was that none of two researchers thought alike on any aspect of IC. This
survey emphasized beyond doubt that there is need to frame new guidelins and criteria
for interstitial cystitis .It is very sad as no international consensus has been reached till
now even five years after that.
In 1987, the NIDDK formed a consensus definition of IC. The criteria were revised in
1988..Today, some 20 years after these research guidelines were first drawn up, the
original aim has not been fulfilled. The guideline has not served its purpose since it was
basically a concept of exclusions and not based on evidence. Very few patients with
interstitial cystitis fulfilled the criteria and for every patient diagnosed with IC, many
remained undiagnosed. It has been estimated that if the guidelines are strictly followed,
around 60% of patients will fail to be diagnosed.
BLADDER PAIN AND PELVIC PAIN
In 2002 first time ICS described interstitial cystitis as painful bladder syndrome. Bladder
pain is defined as suprapubic or retropubic pain which usually increases with bladder
filling and may persist after voiding.
Pelvic pain localizes to the anatomic pelvis abdominal wall at or below the umbilicus ,
lumbrosacral back or the buttocks
DEFINITION OF IC
Syndrome of pelvic pain with urinary, frequency and urgency in the absence of definable
pathology.
PROPOSED PATHOPHYSIOLOGY OF IC
It is believed that the primary defect lies in the urothelium which allows absorption of
substances such as potassium and urea into the bladder wall. This eventually leads to
tissue damage and pain as well as symptoms of frequency and urgency. Activation of
mast cells with histamine release and neurogenic inflammation are also considered
important factors in the etiopathology of IC. These changes cause upregulation of the
sensory nerves of the bladder resulting in a state of “neurologic wind -up” which presents
as hyperalgesia.
SYMPTOMS
The symptoms of IC patients are by no means uniform. These symptoms are related to
urological, gynecological, gastrointestinal and pelvic floor organs. They may originate
from the bladder, urethra, prostate, vagina, uterus, rectum and pelvic floor muscles. The
hallmark of IC is a triad of pain, frequency and urgency. Pain is the most important
symptom. Pain is felt in suprapubic, retropubic, infrapubic, urethral, genital and /or rectal
regions. Pain may be continuous or related to the micturition cycle. Sometimes patients
cannot define the exact location of pain and feel it is situated deep in the pelvis. Some
patients mention burning, pressure sensation of urinary discomfort instead of pain. Males
may complain of painful ejaculation while women present with dyspareunia.
Frequency more than eight times is considered abnormal. While most of the patients with
IC have frequency and urgency, it is not a must. Patients with normal frequency and
without urgency can also have IC. Nocturia may or may not be present. In other words,
patients can have a variety of different symptom combinations.
Initially a patient may present with only one symptom and develop the fully-fledged
syndrome over a span of 5 years. IC is a chronic disease, so the above-mentioned
symptoms must be present for more than 3 months to diagnose IC.
UNUSUAL SYMPTOMSA typical patient of IC may present with triad of pain frequency and urgency but few
patients may present with unusual symptoms like incomplete evacuation, dribbling,
desire to pass urine immediately after micturition, difficulty in sitting and walling with
urinary symptoms, anal discomfort. These symptoms are not mentioned in the standard
textbooks but patients commonly complain like that. I feel that these symptoms must be
included in the textbooks. These symptoms are not due to obstruction but they are felt by
the patients as they pass little amout of urine every void and have problems of increased
sensation.
IC should also be considered in those patients of urinary tract infection who do not
improve after adequate therapy, patients of urge incontinence with pain and patients of
chronic abacterial prostatitis who do not improve . I believe that IC and chronic abacterial
prostatitis are the same diseases.
PHYSICAL EXAMINATIONOn examination, the patient is essentially normal except for suprapubic tenderness or
anterior vaginal wall tenderness in females and prostatic tenderness in males.
INVESTIGATIONS
Urine routine and culture
Urine cytology
USG of KUB
Voiding log
Urodynamics
Cystoscopy
Potassium sensitivity test
Symptom scales
Urine analysis, urine culture, and sonography of kidney, ureter and bladder are important
for the exclusion of other diseases with similar symptoms and are considered very
important investigations. On ultrasonography, presence of a small capacity bladder
(normal bladder wall thickness) with normal upper tracts should raise the suspicion of IC.
I do urine routine , urine culture and sonography in all the patients and if they all are
normal I subject the patietnt to cystoscopy and hydrodistension.
Voiding diary, urodynamics, potassium test and symptom scales are not routinely done
in all the patients. voiding diary can be helpful as it shows that patients void small
quantities every time. Some of severe cases of IC may void 50 times in the day.
Urodynamics and potassium tests are not very important and are considered optional
tests. It is believed that urodynamics does not give any additional information and should
be reserved for those patients where OAB is also suspected. Intravesical PST ( Potassium
Sensitivity test) detects the permeability of bladder epithelium. This test has been shown
to be positive in 75% of patients with IC and is also positive in patients with detrusor
instability, radiation cystitis and bacterial cystitis. This test is not diagnostic of IC. It has
its own drawbacks and is painful. PST is therefore not recommended.
Cystoscopy with or without hydrodistension is a very controversial investigation. While
Europeans feel that cystoscopy with bladder biopsy is essential to diagnose IC, others feel
that there is no need to perform cystoscopy. In the presence of hematuria, cystoscopy
becomes mandatory to rule out malignancy in patients over the age of 40 years.
Glomerulations and Hunner’s ulcer have been reported to be present in all patients with
IC, but this is not the case. Moreover, these findings are very subjective and differ from
observer to observer. In an attempt to standardize cystoscopic findings, ESSIC
( European Society for the Study of Interstitial Cystitis) described various grades of
bladder mucosa appearance on cystoscopy.
Copenhagen Cystoscopic classification of bladder mucosa (May 2003)

Grade 0= normal mucosa

Grade I = petechiae in at least two quadrants

Grade II = large submucosal bleeding (ecchymosis)

Grade III = diffuse global mucosal bleeding

Grade IV = mucosal disruption, with or without bleeding/oedema
CYSTOSCOPIC APPEARANCE OF BLADDER MUCOSA
SHOWING PATECHIAE AND ECCHYMOSIS
Cystoscopy is done under anaesthesia using either saline or glycine as irrigation solution,
the height of the reservoir is kept at 80 cm and the bladder is filled under gravity. Then
the bladder is evacuated and refilled again. The colour of the evacuated fluid is noted. It
is necessary to distend the bladder again as the petechiae and ecchymosis develop on
evacuation of the bladder and can be seen when we distend the bladder again. In few
cases patechiae and ecchymosis develop on distension. Some patients bleed from all over
the mucosa .If hydrodistension is to be done, the bladder is kept distended for 3 minutes
and then evacuated again. After this, bladder biopsies can be taken. Now I do not do
routine biopsy as I have not found it useful after 15 years of biopsy taking. My indication
for taking the biopsy is presence of a lesion before I distend the bladder(predistension
lesion) .The bladder capacity under anaesthesia is also noted. The colour of the terminal
draining fluid is red in the cases where pethechiae and ecchymosis develop. It is
important to note that bladders with normal mucosal findings (grade 0) can also have IC.
The bladder of an IC patient can have any capacity and there is no limit beyond which IC
can be ruled out depending on bladder capacity. Do not hydrodilate the bladder by
increasing the reservoir height. I do not keep foleys catheter after hydrodistension as
patients find it very uncomfortable when they wake up from anaesthesia. As a
precautionary measure I do not distend the bladder more that 750 ml of saline as I fear
that bladder may rupture. After cystoscopy when patients wake up they have a desire to
pass urine though their bladder is empty.
SCREENING AND DIAGNOSTIC TOOLS:
Clinical scales such as the O’Leary-Sant questionnaire, the University of Wisconsin
interstitial cystitis scale and the Pelvic pain and Urgency/Frequency (PUF) scale are
available for clinical use but cannot diagnose IC. It is believed that they need further
evaluation.These scales are not used in INDIA.
URINARY MARKERS:
They can be of help in future to diagnose IC. Antiproliferative factor (APF) is currently
the most extensively studied marker and most promising, but still not available for
clinical use. Other markers being studied are HP-EGF. EGF, Insulin-like growth factor 1
etc. but need further evaluation.
TREATMENT:
I use a protocol of staged treatment. All the patients are subjected to cystoscopy and
therapeutic hydrodistension after their urine culture, urine routine and sonography are
normal. Around 40% patients inprove with hydrodistension and do not need further
therapy. Hydrodistension is a very controversial modality of treatment but gives
immediate relief in most of the patients. A few patients also enjoy long-lasting benefit. If
a patient remains symptom-free after hydrodistension for more than a year, it can be
repeated when the symptoms develop again. On cystoscopy under anasthesia if patient
has less than 150 ml capacity he is advised for surgical therapy .
If patients do not improve after hydrodistension then they are put on triple drug therapy
including amytrptaline, hydroxyzine and gabapantin for 3 months. PPS is not available
in India. It is important to note that the routine analgesics do not act on such patients and
should not be prescribed alone. Antibiotics also do not work so they should also be
avoided.
If the patient does not respond or there is flare-up during oral therapy, the patient is
treated with intravesical rescue solutions. The rescue solutions are prepared by mixing an
anaesthetic agent with steroid and heparin and sodium bicarbonate is added to facilitate
absorption. The solution is usually kept in the bladder for 15-20 minutes and 6-8
treatments are given at intervals of 2 weeks. My favourite rescue solution consists of 40
ml sensorcaine 0.5%, 20 ml sodabicarb , 2cc dexamethasone and 10000 unit of heparin.
Some patients do not respond and continue to suffer. These patients are offered
intravesical Botulinum toxin injections or neuromodulation. 200 to 300 units of
botulinum toxin is injected in the bladder cystoscopically at 20 to 30 sites (10 units per
injection site) using a specially designed needle. Botulinum toxin improves the symptoms
in around half of the patients with intractable IC, but the effect is temporary and lasts for
6 to 12 months, making re-injection necessary. Neuromodulation is found effective in
around one third of patients with intractable IC when sacral stimulation is used. First a
test stimulation is carried out for a period of 7 days. If the patient improves, a permanent
generator is implanted to stimulate the S3 nerve root. Although both these modalities are
effective in some patients, they should only be attempted if patients do not improve with
routine treatment.
Surgery is offered as a last resort and various procedures are available with varying
success rates. It includes augmentation cystoplasty, substitution cystoplasty, neobladder
with or without cystectomy. Bladder lesions are ablated with Laser. Surgery is offered to
those patients who have a miserable life and have failed all other therapies.
DIET AND SELF HELPI do not give any specific diet advise. Patients are advised not to take those food items
which cause a flare. Patients are advised to drink less water as it decrease frequency but a
group of patients can not tolerate concentrated urine and need large amount of fluids.
Alternate modalities of treatment like physical therapy, yoga, pelvic floor relaxation are
not popular in India.
NO PROGRESS IN TREATMENTThough lot of basic research has been done no drug is yet developed which cures IC
.Treatment of IC is a challenge and development of oral effective cure should be goal of
international researchers interested in IC. Patients are interested in cure.
CHANGE OF NOMENCLATURE:
In 2002 the ICS for the first time described IC as PBS (Painful bladder syndrome). In
2006 ESSIC adopted the name Bladder Pain Syndrome. The disease is still popularly
known as IC. There are many differences of opinion amongst scientists, urologists and
patient support groups about changing the name of the disease and nothing has been
decided yet.
IC IN CHILDREN Patients under the age of 18 years were automatic exclusions in the
1987 NIDDK research criteria. The diagnosis of IC in children is controversial. Children
do indeed present with dysfunctional voiding. There is no theoretical reason why IC
cannot exist in children. It should always be considered in differential diagnosis in
children who present with pelvic pain, frequency and urgency.
INDIAN SURVEY ON INTERSTITIAL CYSTITISA survey was done at two urological meetings in INDIA. 400 questionnaires were
distributed amongst the urologists who attended the meeting. 131 filled up the
questionnaire and returned back. The analysis was very encouraging,109 believed that IC
exists in INDIA. 104 see patients with IC. 122 agreed that they do see patients with
frequency, urgency, pain syndrome where no disease can be identified. Around 85percent
of responders did urine culture and sensitivity, ultrasonography, and cystoscopy. 50%
believed in performing bladder biopsy. The potassium test is done by only 8%. Very few
urologist did cystoscopy under local anaesthesia.
In treatment, hydrodistension is done by 70 % and oral therapy also prescribed by 70%.
Intravesical therapy is uncommon (30%) and botox and neuromodulation rarely done.
Out of these 131 urologists, 34 preferred IC as the name, 60 PBS and 37 PBS/IC. 104
urologists want Elmiron to be made available in India, 13 do not want it and 14 had no
idea what Elmiron is. 75 of the responders were from major medical institutes in India
while 54 had their own solo practice.( see annexure 1 and annexure 2)
AWARENESS OF IC
The situation amongst urologist is better but not amonst other physicians. We are trying
to increase awareness during conferences by distributing leaflets. International painful
bladder foundation is active in INDIA and I am founder executive member of the
organization based in AMSTERDAM.(www.painful-bladder.org)
ESSIC CHAIRMAN JORGEN NORDLING SPEAKING IN UROLOGICAL
SOCIETY OF INDIA MEETING.
INTERSTITIAL CYSTITIS PATIENT MEETING IN PROGRESS
IMPORTANT GUIDELINES Suspect IC if patient prefers to move by train over road transport as toilet facility
is available in train .

Patient goes to toilet during consultation with physician,.
 IC can be present even if cystoscopic findings are normal.
 IC can be present in normal capacity bladder.
 Do not say to the patient that he/she does not have any disease as all the reports
are normal .
 Do not send the patient to psychiatrist.
 Do not do any thing which causes pain to the patient.
 Do not do hysterectomy for urinary symptoms.
 Do not follow NIH 1987-88 guidelines.
 Do not do cystoscopy without anesthesia.
 Do not hydrodilate bladder at the time of cystoscopy.by increasing the height of
the reservoir.
CONCLUSION
In 2007 there is consensus that a big change is needed in the IC world. There is a need to
draw up a definition and establish criteria for the disease. It is also believed that the new
definition and criteria should be evidence-based and should not be only opinion-based.
All the researchers agree that it is very difficult task but that a start has to be made. Until
the final diagnostic criteria are established, there is a need to work together. There is a
need to follow a common algorithm so that a large amount of data can be collected and
compared. There should be a working algorithm for history-taking, physical examination,
investigations, cystoscopy, biopsy and treatment. Furthermore, basic research has to be
done to find cure for this debilitating condition.
Annexure 1
INDIAN SURVEY ON INTERSTITIAL CYSTITIS
DATE- 8 FEB 2007 PLACE- PATNA, INDIA, USICON- 2007.
DATE- 1ST MAR 2007, PLACE- GOA , INDIA, UROLOGICA 2007
QUSTIONNAIRE DISTRIBUTED- 400. RESPONSE RECEIVED- 131
TH


QUESTIONNAIRE
Do you think IC exists in INDIA.
YES/NO
Do you see patients of IC
YES/NO

Do you see patients of pain, frequency and urgency
YES/NO
Where no diagnosis can be made and patient do not
Improve in spite of treatment






How do you treat such patients
antibiotics
Analgesics
Alpha blockers
As IC
 what investigations will you do in such a case
X-RAY KUB
USG kub
Urine C/S
VOIDING DIARY
Cytology
Cystoscopy
KCL TEST
URODYNAMICS
BLADDER BIOPSY
In a suspected case of IC you will do cystoscopy under
local anesthesia
General anaesthesia
Spinal anaesthesia
If you diagnose a patient of IC how do you treat
hydrodistension
Oral therapy
Intravesical drugs
Intravesical BOTOX
INTERSTIM
What term will you prefer for such syndrome
IC
PBS
PBS/IC
What best describes you
solo practicing
Institute based
Do you think elmiron should be made available in India
YES/NO
ANNEXURE 2
SURVEY RESULTS
1. do you believe IC exists in India
2. do you see patients of IC
3 do you see patients of pain frequency and urgency
yes 109 no 22
yes 104 no 25
yes 122 no 06
where no cause is diagnosed
4. how you treat such patients-
antibiotics
45
analgesics
58
alfa blockers
58
as IC
55
5.what investigations will you do in IC patient
XRAY KUB
54
USG KUB
110
Urine C/S
115
Voiding diary 98
Cytology
85
Cystoscopy
116
Kcl test
09
Urodynamics
72
Bladder biopsy 71
6. under which anaesthesia you will do cystoscopy
Local
22
General
94
Spinal
17
7.what treatments do you offer to such patients
hydrodistension 89
oral therapy
88
intravesical
42
botox
17
interstim
02
8. what terminology will you prefer
IC
34
PBS
60
PBS/IC
37
9. what describes your practice
solo
54
institute based
75
10. do you think elmiron should be made available
yes 104 no 13
in India.
14 did not know what elmiron is