Interstitial Cystitis/Bladder Pain Syndrome

What is interstitial cystitis?

Interstitial cystitis — now known as bladder pain syndrome (IC/BPS) — is long-term (chronic) discomfort, pain or pressure in your bladder area (suprapubic region). “Interstitial” means it affects the spaces between your tissues or organs. “Cystitis” means inflammation.

If you have IC/BPS, you need to urinate (pee) more often than usual (frequency) and feel like you have to pee right away (urgency).

Other names for interstitial cystitis include:

• Painful bladder syndrome
• Frequency-urgency-dysuria syndrome
• Chronic pelvic pain

What are the types of interstitial cystitis/bladder pain syndrome?

There are two types of interstitial cystitis/bladder pain syndrome:

• Ulcerative IC/BPS. Hunner’s ulcers are a type of painful sore that forms on the wall of your bladder. Hunner’s ulcers affect about 5% to 10% of people who have IC/BPS.
• Non-ulcerative IC/BPS. In non-ulcerative IC/BPS, you have very tiny hemorrhages (glomerulations) on your bladder wall. About 90% of IC/BPS cases are non-ulcerative.

What is stage 4 interstitial cystitis/bladder pain syndrome?

Stage 4 interstitial cystitis/bladder pain syndrome is when you have continuing IC/BPS symptoms for over two years. Your bladder tissue becomes very hard and can’t hold as much pee. Stage 4 IC/BPS most commonly affects people who have Hunner’s ulcers.

How common is interstitial cystitis/bladder pain syndrome?

Interstitial cystitis/bladder pain syndrome is common. In the U.S., it affects approximately:

• 1 to 4 million people assigned male at birth (AMAB)
• 3 to 8 million people assigned female at birth (AFAB)

What are the symptoms of interstitial cystitis/bladder pain syndrome?

Interstitial cystitis/bladder pain syndrome symptoms vary. They may be mild or severe. They may also be constant or only appear occasionally. Symptoms include:

• Inflamed bladder (cystitis)
• Pain in your bladder region
• Pressure or discomfort when your bladder is filling with pee
• Peeing more often and feeling like you need to pee right away
• Only peeing a small amount

If you’re AFAB, your symptoms often get worse when you’re menstruating.

What does it feel like?

Interstitial cystitis/bladder pain syndrome may feel different from person to person. You may only feel mild discomfort. Or you may feel a lot of pain and sudden, frequent urges to pee.

What causes interstitial cystitis/bladder pain syndrome?

Healthcare providers and medical researchers don’t completely understand what causes interstitial cystitis/bladder pain syndrome. They suspect that it may relate to certain medical conditions, including:

• Autoimmune diseases
• Allergies
• Defects in your bladder lining
• Vascular disease (vasculopathy)
• Abnormalities in your cells that cause allergic symptoms (mast cells)
• The presence of abnormal substances in your pee, including consistently high protein levels (proteinuria)
• Unidentified infections

Who does interstitial cystitis/bladder pain syndrome affect?

Anyone can get interstitial cystitis/bladder pain syndrome. But you may be at a greater risk of getting IC/BPS if you:

• Are AFAB
• Are 30 or older
• Have another condition that causes chronic pain

How is interstitial cystitis/bladder pain syndrome diagnosed?

There aren’t any specific tests to diagnose interstitial cystitis/bladder pain syndrome. However, a healthcare provider will order tests to rule out other infections or conditions. These tests may include:

• Medical history. A healthcare provider may ask you to record your symptoms in a journal or diary. They may also ask you to record what you drink, how much you drink and how much you pee.
• Urinalysis (urine test). You’ll provide a pee sample, and a healthcare provider will examine it under a microscope to look for blood in your pee (hematuria) and signs of an infection, such as organisms, germs, pus or white blood cells. A provider will prescribe antibiotics to treat an infection. A provider may diagnose IC/BPS if your pee is sterile after treatment, but you still have symptoms.
• Biopsy. A provider will sedate you (put you under) with anesthesia. They’ll then use a thin needle to take a tissue sample of your bladder wall and urethra to rule out other conditions, including bladder cancer.
• Cystoscopy. A provider will examine the inside of your urethra and bladder with a thin, lighted tube with an eyepiece on one end (cystoscope) to help rule out bladder cancer. The provider will gently insert it into your urethra and pass it up to your bladder. You won’t be under anesthesia during a cystoscopy. But if the provider orders a bladder biopsy along with a cystoscopy, you may need anesthesia.
• Cystoscopy under anesthesia with hydrodistension. A provider may perform cystoscopy with bladder hydrodistension. They’ll perform a cystoscopy and stretch (distend) your bladder as big as possible (to maximum capacity) by filling it with water. This procedure can reveal ulcers or cracks in your bladder. It’s a painful procedure, so it requires anesthesia. But many people have temporary relief of their IC/BPS symptoms after.

How do you fix interstitial cystitis/bladder pain syndrome?

You can’t fix or cure interstitial cystitis/bladder pain syndrome. But there are many ways to treat it. The goal of IC/BPS treatment is to relieve your symptoms. A healthcare provider will work with you to decide the most appropriate treatment. They may even combine treatments.

Providers can’t predict how you’ll respond to each treatment. You’ll go through a trial-and-error process with various treatments to see how your body responds. Your symptoms may go away, or they may become more severe. Even if your symptoms disappear, they may return later.

IC/BPS treatments may include:

Changes to your eating patterns

Some people who have IC/BPS report that certain foods and drinks worsen their symptoms (triggers). Keep a diary or journal of what and how much you eat and drink each day. Noting what you eat and drink before your symptoms start and/or a flare-up can help you learn what foods and drinks to avoid.

If you notice that acidic foods and drinks — for example, citrus fruits, peppers, carbonated beverages and tomatoes — cause flare-ups, a provider may recommend taking an antacid with meals. Antacids reduce the amount of acid that gets into your pee.

What foods should I not eat if I have interstitial cystitis/bladder pain syndrome?

Common foods and drinks that may cause IC/BPS symptoms include:

• Alcohol
• Artificial sweeteners
• Caffeine
• Carbonated beverages
• Chocolate
• Tomatoes
• Fruit juices

A provider may refer you to a dietitian to help you create the best eating patterns to reduce IC/BPS symptoms.

Physical activity

Exercise and physical activity may help relieve IC/BPS symptoms, including:

• Walking
• Bicycling
• Gentle stretching or yoga

Reducing stress

Stress may trigger IC/BPS flare-ups. Learning to recognize and manage stress may help alleviate your symptoms. Talking to a mental health professional (psychotherapy) can help you reduce stress.

Physical therapy

Your pelvic floor muscles hold your bladder in place and help control when you pee. Strengthening (Kegel exercises), stretching and especially relaxing your pelvic floor muscles can help relieve interstitial cystitis/bladder pain syndrome symptoms. A provider can help ensure you’re performing these exercises correctly. Many people work with a pelvic floor physical therapist to make sure they’re properly relaxing their pelvic floor muscles.

Bladder retraining

If you have bladder pain, it’s easy to get into the habit of using the bathroom as soon as you feel pain or urgency, even if your bladder isn’t full. Your body conditions itself to go to the bathroom more often. Bladder retraining helps you overcome this habit by training you to hold your pee for longer periods.

To practice bladder retraining, keep a diary or journal of how often you pee and how often you have the urge to pee. Use your diary or journal to help you gradually increase the time between bathroom breaks.

Oral medications

The following oral medications may help treat IC/BPS symptoms:

• Heartburn medications. Over-the-counter antacids (Tums®, Rolaids®) may help reduce your symptoms by decreasing the amount of acid in your body.
• Antidepressants. A low dose of tricyclic antidepressants such as amitriptyline (Elavil®) may help reduce pain and urinary frequency.
• Hydroxyzine. Histamine may cause IC/BPS symptoms. Hydroxyzine is an antihistamine that helps remove histamine from your bladder.

Bladder instillations

A provider will insert a thin, plastic tube (catheter) in your urethra and guide it up to your bladder. They’ll then fill your bladder with a mixture of medications that may include dimethyl sulfoxide (DMSO), a steroid and a numbing medication. DMSO is a liquid medicine that helps alleviate symptoms.

Hydrodistension

A provider fills your bladder with sterile water to stretch out your bladder. This increases the amount of pee your bladder can hold. Hydrodistension may also calm or break the overactive nerve endings that tell your brain your bladder is in pain. You’ll receive anesthesia during hydrodistension so you’re asleep and won’t feel any pain during the procedure.

Nerve stimulation

Nerve stimulation (neuromodulation therapy) regulates your bladder by reducing urgency and frequency. It uses electrical stimulation to stimulate your nerves and produce a response. It sometimes helps alleviate pain in your bladder and abdominal area.

Botulinum toxin injections

A provider injects botulinum toxin (Botox®) into your bladder muscle through a cystoscope. Small amounts of Botox paralyze the muscle and alleviate pain. You may need Botox injections every four to nine months.

Surgery

A provider may recommend surgery if you have severe IC/BPS symptoms and don’t respond to other treatments. They may remove part or all of your bladder (cystectomy).

Other considerations

In addition to treating your bladder and pelvic floor, a provider will consider other conditions that may cause part of your pain, including:

• Hormonal imbalances
• Endometriosis
• Issues that affect your small or large bowel

Will interstitial cystitis/bladder pain syndrome ever go away?

It depends. Most people who have interstitial cystitis/bladder pain syndrome need treatment for their entire lives. If they don’t get treatment, their symptoms may return. They may even have flare-ups while they’re actively treating IC/BPS.

Some people respond well to treatment. Their symptoms slowly improve and even go away.

What is the fastest way to get rid of interstitial cystitis/bladder pain syndrome?

Talk to a healthcare provider. They can tell you what treatments may offer the fastest relief for your IC/BPS symptoms.

How soon after treatment will I feel better?

It may take several weeks or months before your symptoms start to improve after IC/BPS treatment.

Can interstitial cystitis/bladder pain syndrome be prevented?

Healthcare providers and medical researchers don’t know how to reduce your risk of developing interstitial cystitis/bladder pain syndrome or prevent symptoms from recurring. You may be able to prevent flare-ups by:

• Keeping a food diary or journal, identifying foods that may cause problems and avoiding them
• Maintaining your treatment even after symptoms go away
• Reducing stress in your life

What can I expect if I have interstitial cystitis/bladder pain syndrome?

For many people, interstitial cystitis/bladder pain syndrome is a long-term condition. Your symptoms may be mild or severe. They may appear only occasionally, or they may be persistent.

Talk to a healthcare provider to help determine your outlook and the best treatment options.

What is the life expectancy of someone with interstitial cystitis/bladder pain syndrome?

Interstitial cystitis/bladder pain syndrome isn’t a life-threatening condition. It doesn’t cause bladder cancer and won’t affect your life expectancy.

How do I take care of myself if I have interstitial cystitis/bladder pain syndrome?

The following may help reduce the length and severity of your interstitial cystitis/bladder pain syndrome flare-ups:

• Take medicines that help reduce your symptoms as soon as you feel a flare-up start.
• Drink lots of water to help dilute your pee.
• Avoid foods and drinks that trigger symptoms.
• Place an ice pack or heating pad on your abdominal area or the space between your genitals and rectum (perineum).
• Take a warm sitz bath.
• Help your pelvic floor muscles relax by practicing certain yoga poses. Squat with your legs wide apart (“goddess squat”) or lie on your back, press your knees against your chest, point the soles of your feet toward the ceiling and grab the outsides of your feet (“happy baby”).
• Try relaxation techniques, including deep breathing exercises, meditation or even getting a massage.
• Avoid tight clothing that presses on your abdomen, including tight pants, hosiery, tights and girdles.
• If sexual intercourse triggers flare-ups, take pain relievers (analgesics) before sex and use lubricants to reduce discomfort.

When should I see a healthcare provider?

Schedule an appointment with a healthcare provider if you have symptoms of interstitial cystitis/bladder pain syndrome. A provider will order tests to rule out infections or other conditions that may cause IC/BPS symptoms. They may also recommend or prescribe medications.

When should I go to the ER?

Go to the nearest emergency room if your symptoms are severe or don’t go away after treatment.

What questions should I ask a healthcare provider?

It may be helpful to ask your provider:

• How can you tell that I have interstitial cystitis/bladder pain syndrome?
• If I don’t have interstitial cystitis/bladder pain syndrome, what other condition might I have?
• What tests will you conduct to confirm your diagnosis?
• What treatment do you recommend?
• Are there any side effects to your recommended treatment?
• Do you recommend one treatment option or a combination of treatments?
• What’s the complete list of foods and drinks I should avoid?
• What lifestyle changes can help manage my symptoms?
• Should I see a dietitian, urologist or another specialist?

What is the difference between interstitial cystitis/bladder pain syndrome and a urinary tract infection?

People sometimes mistake interstitial cystitis/bladder pain syndrome for a urinary tract infection (UTI). But IC/PBS and UTIs aren’t the same. Microorganisms (usually bacteria, especially E. coli) cause UTIs. Healthcare providers don’t yet understand what causes IC/BPS. But medical conditions that may relate to IC/BPS include autoimmune diseases, allergies and problems with your blood vessels.