What I need to know about
 

Interstitial Cystitis/Painful 

Bladder Syndrome

Interstitial Cystitis/Painful 

Bladder Syndrome 

U.S. Department 

of Health and 

Human Services 

NATIONAL INSTITUTES OF HEALTH 

National Kidney and Urologic Diseases 

Information Clearinghouse

 

 

What I need to know about 

Interstitial Cystitis/Painful 

Bladder Syndrome 

U.S. Department 


of Health and
 

Human Services
 

NATIONAL INSTITUTES OF HEALTH 

National Kidney and Urologic Diseases 

Information Clearinghouse
 

Contents
 

What is interstitial cystitis/painful bladder 


syndrome (IC/PBS)? ............................................... 1
 

What are the signs of a bladder problem?............ 2
 

What causes bladder problems? ............................ 3
 

Who gets IC/PBS?................................................... 4
 

What tests will my doctor use for diagnosis 


of IC/PBS? ............................................................... 5
 

What treatments can help IC/PBS?....................... 7
 

Points to Remember ............................................. 14
 

Hope through Research........................................ 15
 

Pronunciation Guide............................................. 16
 

For More Information .......................................... 17
 

Acknowledgments ................................................. 18
 
 

 

 

 

 

 

 

 

What is interstitial cystitis/painful 


bladder syndrome (IC/PBS)?
 

Interstitial cystitis*/painful bladder syndrome 

(IC/PBS) is one of several conditions that causes 

bladder pain and a need to urinate frequently and 

urgently. Some doctors have started using the 

term bladder pain syndrome (BPS) to describe this 

condition. 

Your bladder is a balloon-shaped organ where 

your body holds urine. When you have a 

bladder problem, you may notice certain signs or 

symptoms. 

*See page 16 for tips on how to say the words in 

bold type. 

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What are the signs of a bladder 


problem?
 

Signs of bladder problems include 

● Urgency. The feeling 

that you need to go right 

now! Urgency is normal 

if you haven’t been near 

a bathroom for a few 

hours or if you have 

been drinking a lot of 

fluids. But you may have 

a problem if you have 

strong urges before your 

bladder has had time to fill. All of a sudden, you 

feel a strong urge to go. At times, you may even 

have an accident because the urge strikes so 

quickly you don’t have time to find a bathroom. 

● Frequency. The feeling that you need to go 

much more often than anyone else. Doctors and 

nurses use the term void, which means to empty 

the bladder. Most people void between four and 

seven times a day. Drinking large amounts of 

fluid can cause more frequent voiding. Taking 

blood pressure medicines called diuretics, or 

water pills, can also cause more frequent voiding. 

If you void more than eight times a day, and you 

don’t take diuretics or drink large amounts of 

fluid, it may be the sign of a problem. 

2 
 

 

 

 

 

 

● Pain. The feeling of more than discomfort when 

you need to go. Having a full bladder may be 

uncomfortable, but it should not be painful. You 

may have a problem if you feel burning or sharp 

pain in your bladder or urethra—the opening 

where urine leaves the body. 

Some people may have pain without urgency or 

frequency. Others have urgency and frequency 

without pain. 

What causes bladder problems? 

Many different problems can cause urgency, 

frequency, and bladder pain. Just a few of 

them are 

●	 bowel disorders 

●	 endometriosis—tissue that normally lines the 

womb that appears in other places outside of the 

womb 

●	 bladder cancer 

● infections

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Your doctor will ask you questions and run tests to 

find the cause of your bladder problems. Usually, 

the doctor will find that you have either an 

infection or an overactive bladder. But urgency, 

frequency, and pain are not always caused by 

infection. 

Sometimes the cause is hard to find. If all the test 

results are normal and all other diseases are ruled 

out, your doctor may find that you have IC/PBS. 

Who gets IC/PBS? 

IC/PBS affects both men and women, but it is nine 

times more common in women. It can occur at any 

age, but it is most common in middle age. 

People with IC/PBS rarely have bladder pain all 

the time. The pain usually comes and goes as 

the bladder fills and then empties. The pain may 

go away for weeks or months and then return. 

People with IC/PBS sometimes refer to an attack 

of bladder pain as a flare or flare-up. Stress may 

bring on a flare-up of symptoms in someone who 

has IC/PBS. But stress does not cause a person to 

get IC/PBS. 

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What tests will my doctor use for 


diagnosis of IC/PBS?
 

Finding the cause of bladder pain may require 


several tests.
 

Urine sample. At the doctor’s office, you may be 

given a cup to take into the bathroom. A health 

professional will give you instructions for collecting 

urine in the cup. If you have a bladder infection, 

your urine will contain germs and maybe pus that 

can be seen with a microscope. The doctor can 

treat an infection by giving you antibiotics. If your 

urine is germ-free for weeks or months, but you 

still have bladder pain, the doctor may decide that 

you have IC/PBS. 

Bladder exam with a scope. The doctor may do 

an exam to see the inside of your bladder using 

a cystoscope. The tip of this long, thin scope is 

guided gently up the urethra and into the bladder. 

The doctor can then see inside your bladder by 

looking through an eyepiece at the other end of 

the scope. The doctor 

may fill the bladder with a 

liquid. When the bladder 

is filled, the doctor can 

see the inner wall better. 

After the exam, you will 

release the liquid naturally 

through your urethra. 

5 
 

 

 

Cystoscope 

Inside the Bladder 

What does the doctor learn from looking inside 

your bladder? This exam can help the doctor 

make sure cancer is not in the bladder. If you 

have a bladder stone, the doctor can take it out 

through the cystoscope. 

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Symptom scale. Your doctor may ask you to fill 

out a form with a series of questions about how 

you feel. The symptom scale cannot be used to 

diagnose IC/PBS but may allow your doctor to 

better understand how you are responding to 

treatment. 

While tests may aid your doctor in making a 

diagnosis of IC/PBS, a careful review of your 

symptoms and a physical exam in the office 

are generally the most important parts of the 

evaluation. 

What treatments can help IC/PBS? 

No one treatment for IC/PBS has been found that 

works for everyone. Your doctor or nurse will 

work with you to find a treatment plan that meets 

your special needs. The plan may include diet 

and lifestyle changes, bladder retraining, activity 

and exercise, physical therapy, and various types 

of medicines. You should expect some treatment 

failures along the way, but, with time, you and 

your doctor or nurse should find a treatment that 

gives you some relief and helps you cope with your 

disease. 

7 
Keeping a food diary might help you identify foods that 

cause flare-ups. 

Diet and Lifestyle Changes 

Some people with IC/PBS find that certain foods or 

drinks bring on their symptoms. Others find no link 

between symptoms and what they eat. 

Learning what foods cause symptoms for you may 

require some trial and error. Keep a food diary and 

note the times you have bladder pain. The diary 

might reveal that your flare-ups always happen, for 

example, after you eat tomatoes or oranges. 

Some doctors recommend taking an antacid 

medicine with meals. The medicine reduces the 

amount of acid that gets into the urine. 

If you make changes to your diet, remember to eat 

a variety of healthy foods. 

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Bladder Retraining 

Bladder retraining is a way to help your bladder 

hold more urine. People with bladder pain often 

get in the habit of using the bathroom as soon 

as they feel pain or urgency. They then feel the 

need to go before the bladder is really full. The 

body may get used to frequent voiding. Bladder 

retraining helps your bladder hold more urine 

before signaling the urge to urinate. 

Keep a bladder diary to track how you are doing. 

Start by noting the times when you void. Note how 

much time goes by between voids. For example, 

you may find that you return to the bathroom every 

40 minutes. 

Try to stretch out the time between voids. If you 

usually void every 40 minutes, try to wait at least 

50 minutes before you go to the bathroom. 

If your bladder becomes painful, you may use the 

bathroom. But you may find that your first urge to 

use the bathroom goes away if you ignore it. Find 

ways to relax or distract yourself when the first 

urge strikes. 

After a few days, you may be able to stretch the 

time out to 60 or 70 minutes, and you may find that 

the urge to urinate does not return as soon. 

9 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Activity 

If you have IC/PBS, you may feel the last thing 

you want to do is exercise. But many people feel 

that easy activities like walking or gentle stretching 

exercises help relieve symptoms. 

Physical Therapy 

Your doctor or nurse may suggest pelvic exercises. 

The pelvic muscles hold the bladder in place and 

help control urination. The first step is to find 

the right muscle to squeeze. A doctor, nurse, or 

physical therapist can help you. One way to find 

the muscles is to imagine that you are trying to stop 

passing gas. Squeeze the muscles you would use. 

If you sense a “pulling” feeling, you have found the 

right muscles for pelvic exercises. 

You may need exercises to strengthen those 

muscles so that it’s easier to hold in urine. Or you 

may need to learn to relax your pelvic muscles if 

tense muscles are part of your bladder pain. 

Some physical therapists specialize in helping 

people with pelvic pain. Ask your doctor or nurse 

to help you find a professional trained in pelvic 

floor physical therapy. 

10 
 

 

 

 

 

 

 

 

 

 

 

 

 

Reducing Stress 

Stress doesn’t cause IC/PBS. But stress may trigger 

painful flare-ups in someone who has IC/PBS. 

Learning to reduce stress in your life by making 

time for relaxation every day may help control 

some symptoms of IC/PBS. 

Oral Medicines 

Pain pills like aspirin, ibuprofen, or acetaminophen 

can help control mild bladder pain. Advil and 

Motrin are examples of ibuprofen. Tylenol is an 

example of acetaminophen. Talk with your doctor 

if you feel you need a stronger pain medicine. 

Your doctor may recommend a medicine, pentosan 

polysulfate sodium, sold as Elmiron, which is 

approved for treating the pain of IC/PBS. You 

may need to take this medicine for up to 6 months 

before you notice improvement. Elmiron does 

not work for everyone, but some people with 

IC/PBS have found relief taking it. You need a 

doctor’s order for Elmiron. If you don’t notice 

improvement of your symptoms in 6 months, this 

medicine is not likely to work. 

11 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Researchers are also looking at other kinds of 

medicines. Medicines that treat heartburn might 

help bladder symptoms by reducing the amount of 

acid made in the body. Muscle relaxants can keep 

the bladder from squeezing at the wrong time. 

Keeping the bladder muscle relaxed helps ease the 

symptoms of IC/PBS. 

Bladder Stretching 

The doctor may stretch the bladder by filling it with 

liquid. You will be given an anesthetic to prevent 

pain and help relax your bladder muscles. Some 

patients have said their symptoms were helped 

after this treatment. 

Bladder Medicines 

Many patients who have IC/PBS find relief after 

a treatment in which their bladders are filled with 

a liquid medicine. The doctor guides a tube into 

your bladder and slowly fills the bladder with a 

liquid that eases irritation of the bladder wall. 

The liquid may be a compound called DMSO or a 

solution that contains heparin and a pain medicine 

called lidocaine. 

You will keep the liquid in your bladder for about 

15 minutes and then release it. You can have this 

treatment once every week or every other week for 

1 or 2 months. You may not feel any better until 

the third or fourth treatment. 

12 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

13 

Nerve Stimulation 

If you have tried diet changes, exercise, and 

medicines and nothing seems to help, you may wish 

to think about nerve stimulation. This treatment 

sends mild electrical pulses to the nerves that 

control the bladder. 

At first, you may try a system that sends the pulses 

through electrodes placed on your skin. If this 

therapy works for you, you may consider having 

a device put in your body. The device delivers 

small pulses of electricity to the nerves around the 

bladder. 

For some patients, nerve stimulation relieves bladder 

pain as well as urinary frequency and urgency. For 

others, the treatment relieves frequency and urgency 

but not pain. For still other patients, it does not work. 

Scientists are not sure why nerve stimulation works. 

Some believe that the electrical pulses block the 

pain signals carried 

in the nerves. If your 

brain doesn’t receive 

the nerve signal, you 

don’t feel the pain. 

Others believe that 

the electricity releases 

endorphins, which are 

hormones that block 

pain naturally. 

Electrical 

stimulator 

Nerves 

Tailbone 

Bladder 

Implanted nerve stimulation 

device 
 

 

Surgery 

As a last resort, your doctor might suggest surgery 

to remove part or all of the bladder. Surgery does 

not cure the pain of IC/PBS in all cases, but if you 

have tried every other option and your pain is still 

unbearable, surgery might be considered. 

Talk with your doctor and family about the possible 

benefits and side effects. 

Points to Remember 

●	 Bladder problems have many possible causes. 

●	 Your doctor will need to do tests to find the 

cause of your bladder problems. If all the test 

results are normal, you may have IC/PBS. 

●	 No one treatment option for IC/PBS works for 

everybody. 

●	 Treatments for IC/PBS may include changing 

your diet and exercising. 

●	 Medicines for IC/PBS may be taken by mouth 

or put directly into the bladder through a tube by 

a doctor. 

●	 Nerve stimulation helps some people with IC/PBS. 

●	 Surgery is a last resort for treating IC/PBS. 

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Hope through Research 

The National Institute of Diabetes and Digestive 

and Kidney Diseases (NIDDK) sponsors programs 

aimed at understanding the causes of IC/PBS 

and finding treatments to relieve its effects. The 

NIDDK’s Division of Kidney, Urologic, and 

Hematologic Diseases supports the Interstitial 

Cystitis Clinical Research Network. This network 

includes many universities and medical centers that 

work together to test new treatments for IC/PBS. 

Participants in clinical trials can play a more 

active role in their own health care, gain access to 

new research treatments before they are widely 

available, and help others by contributing to 

medical research. For information about current 

studies, visit www.ClinicalTrials.gov. 

15 
 

Pronunciation Guide 

acetaminophen (uh-SEE-tuh-MIH-nuh-fen) 

anesthetic (AN-es-THET-ik) 

antacid (ant-ASS-id) 

antibiotics (AN-tee-by-OT-iks)
 

cystoscope (SISS-toh-skohp)
 

diuretics (DY-yoo-RET-iks)
 

endometriosis (EN-doh-MEE-tree-OH-siss)
 

endorphins (en-DOR-finz)
 

heparin (HEP-uh-rin)
 

ibuprofen (EYE-byoo-PROH-fen)
 

interstitial cystitis (IN-tur-STISH-uhl) (siss-TY-tiss)
 

lidocaine (LY-doh-kayn)
 

pentosan polysulfate sodium (PEN-toh-san) 


(POL-ee-SUHL-fayt) (SOH-dee-uhm) 

syndrome (SIN-drohm) 

urethra (yoo-REE-thruh) 

void (voyd) 

16
 
For More Information 

American Urological Association Foundation 

1000 Corporate Boulevard 

Linthicum, MD 21090 

Phone: 1–866–RING–AUA (1–866–746–4282) 

or 410–689–3700 

Fax: 410–689–3800 

Email: patienteducation@auafoundation.org 

Internet: www.auafoundation.org 

www.UrologyHealth.org 

Interstitial Cystitis Association 

100 Park Avenue, Suite 108A 

Rockville, MD 20850 

Phone: 1–800–HELP–ICA (1–800–435–7422) 

or 301–610–5300 

Fax: 301–610–5308 

Email: ICAmail@ichelp.org 

Internet: www.ichelp.org 

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Acknowledgments 

Publications produced by the Clearinghouse are 

carefully reviewed by both NIDDK scientists 

and outside experts. The National Kidney and 

Urologic Diseases Information Clearinghouse 

would like to thank the following individuals for 

assisting with the scientific and editorial review of 

the original version of this publication: 

Philip Hanno, M.D.
 

University of Pennsylvania
 

Edward Stanford, M.D.
 

Center for Advanced Pelvic Surgery
 

Centralia, IL
 

Thank you also to Vicki McClelland, executive 

director of the Free Medical Clinic of the Northern 

Shenandoah Valley in Winchester, VA, for 

facilitating field-testing of the original version of 

this publication. 

The U.S. Government does not endorse or favor any specific 

commercial product or company. Trade, proprietary, or company 

names appearing in this document are used only because they are 

considered necessary in the context of the information provided. 

If a product is not mentioned, the omission does not mean or 

imply that the product is unsatisfactory. 

18
 
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Email: nkudic@info.niddk.nih.gov 

Internet: www.urologic.niddk.nih.gov 

The National Kidney and Urologic Diseases Information 

Clearinghouse (NKUDIC) is a service of the National Institute 

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NIDDK is part of the National Institutes of Health of the U.S. 

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This publication is not copyrighted. The Clearinghouse 

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This publication is available at www.urologic.niddk.nih.gov. 

This publication may contain information about medications. 

When prepared, this publication included the most current 

information available. For updates or for questions about any 

medications, contact the U.S. Food and Drug Administration 

toll-free at 1–888–INFO–FDA (1–888–463–6332) or visit 

www.fda.gov. Consult your doctor for more information. 
U.S. DEPArTmENT OF HEALTH 

AND HUmAN SErvICES 

National Institutes of Health 

NIH Publication No. 10–5750 

December 2009