What Is Interstitial Cystitis? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Interstitial cystitis (IC) is a painful condition in which the bladder wall becomes irritated and inflamed.

Chronic inflammation can cause scarring and thickening of the bladder wall, making the bladder very stiff and unable to hold a normal amount of urine.

Most treatments for IC are aimed at controlling symptoms, and no single treatment works for everyone. But most people eventually achieve significant relief from pain and discomfort. (1)

Interstitial cystitis causes mild symptoms in some people and terrible pain and disruption in others. For some, symptoms come and go, while in others they’re present all the time.

Symptoms of IC may go away for a while, only to return months or even years later.

Changes in the bladder caused by interstitial cystitis may have the following symptoms:

Pain Interstitial cystitis can cause sensations of pressure, discomfort, or pain in or around the bladder. The pain may be mild or severe and may also affect the vaginal, urethral, or scrotal areas.

Pain in IC often gets worse as the bladder fills up and is relieved with urination.

Frequent Urination Because the bladder becomes stiff and loses elasticity, people with interstitial cystitis often have the urge to urinate frequently both day and night.

Urinating fewer than eight times during the day and no more than once at night is considered normal. In severe cases of IC, a person may need to urinate up to 60 times per day.

Urgency In people with interstitial cystitis, the need to urinate can be intense and hard to control. In some people, this sensation never goes away, even right after urination.

While certain other disorders that affect the bladder can cause urine leakage, IC typically does not. In fact, leakage can be a clue that you have a different condition.

Sexual Dysfunction Many people with interstitial cystitis experience pain during sexual intercourse. In men, this may include pain after ejaculation.

Nocturia This term denotes the need to urinate multiple times during the night. If it causes nocturia, IC can lead to significant sleep disruption. (1,2)

Doctors don’t know the exact cause of interstitial cystitis, but many researchers believe that it is initially triggered by damage to the bladder lining. (2)

In a 2017 study, researchers found that many people with IC produce a protein, called antiproliferative factor, that makes the bladder sensitive to urine. (3)

This protein prevents the growth of bladder cells, so it may prevent the bladder from healing itself when damage occurs. (2)

Many researchers believe that IC may develop for a number of different reasons, such as the following:

Damage to the Bladder Surgery or other types of trauma may damage the bladder, contributing to this condition.

Bladder Distention The inability to empty your bladder for long periods of time has been associated with interstitial cystitis.

Nerve Damage Spinal cord trauma and inflammation of the pelvic nerves have been suspected as causes.

Bacterial Infection A bladder infection, or cystitis, may contribute to the onset of IC in some people.

Muscle Dysfunction When the pelvic floor muscles aren’t working right, they may contribute to bladder problems.

Autoimmune Disorder Some researchers suspect that the body’s own immune system may attack certain bladder cells in some people with IC. (1,2)

In recent years, the relationship between interstitial cystitis and forms of abuse — including physical and sexual abuse — has been widely discussed. Different studies have come to vastly different conclusions about whether any relationship exists between IC and abuse. (2)

Diagnosing interstitial cystitis typically isn’t a simple process. There isn’t any single medical test that can definitively diagnose IC, or rule it out.

To diagnose IC, your doctor will consider your symptoms and medical history, and perform a physical and neurological exam. Your doctor may also give you a questionnaire about bladder or pelvic pain.

Your doctor may also order or administer other tests to help diagnose IC, or to rule out other health conditions. These tests may include:

Urine Tests Simple tests of a urine sample can rule out other conditions by detecting signs of an active infection or blood in your urine.

Ultrasound of Bladder This noninvasive test allows doctors to see the shape and structure of your bladder, as well as how well you empty it after urination.

Urodynamic Evaluation This test involves filling your bladder with water through a catheter (narrow tube) to measure pressure as it fills and empties.

Cystoscopy This procedure involves inserting a specialized viewing instrument into your bladder to look for ulcers or lesions caused by IC, or other problems, such as a tumor. (1)

Prognosis of Interstitial Cystitis

Interstitial cystitis may come and go on its own, even for extended periods of time. But in some people, meaningful relief from symptoms will occur only with treatment.

Symptom relief may not occur right away with treatment, and it may take several attempts to find a treatment strategy that works for you. But most people with IC eventually achieve significant relief and can live a normal life. (1,2)

Interstitial cystitis isn’t considered a curable condition. Instead, treatment for IC is aimed at reducing the burden of symptoms.

Even if you experience an absence of IC symptoms for a period of time — which may last weeks, months, or even longer — you aren’t considered cured. Instead, you’re considered to be in remission.

While people with interstitial cystitis are typically thought to have the condition for the rest of their lives, that doesn’t mean you should resign yourself to pain, discomfort, and disruption. With treatment, most people with IC can significantly improve their condition. (1,2)

There isn’t any single treatment that works for everyone with interstitial cystitis. Your doctor will recommend treatments on the basis of your symptoms and whether previous treatments have failed to control them. (1)

The American Urological Association recommends starting with more conservative therapies in most cases (e.g. when ulcers or lesions are not present), before gradually moving to more invasive treatments when “other treatments have not provided adequate symptom control and quality of life improvement.” (4)

Treatment strategies for IC typically follow this series of phases.

Phase 1: Lifestyle measures and physical therapy. The first step in treating IC is to identify things that trigger your symptoms, such as stress or certain foods and beverages. Your doctor may also recommend that you see a pelvic floor physical therapist, who can manipulate muscles in the area or prescribe exercises to help with symptoms.

Phase 2: Medications. Your doctor may prescribe a number of drugs to treat IC symptoms. Some of these medications are taken by mouth, while others are applied directly to the bladder through a catheter (narrow tube).

Phase 3: Neuromodulation, ulcer cauterization, and Botox. Neuromodulation involves delivering electrical impulses to nerves to change how they work. Cauterizing bladder ulcers (known as Hunner’s ulcers or Hunner’s lesions) can offer long-term pain relief, and botulinum toxin (Botox) injections into the bladder muscle may help reduce IC pain when other treatments don’t.

Phase 4: Cyclosporine. The immunosuppressant drug cyclosporine (Neoral) carries many risks, but it may help when other treatments for IC are ineffective.

Phase 5: Surgery. As a last resort, surgery to divert the flow of urine or remove the bladder may be considered. (1,2)

Medication Options

At first, your doctor may recommend that you take over-the-counter pain relief medications for interstitial cystitis. If additional drug treatments are needed, your doctor may recommend the following oral drugs (taken by mouth):

• amitriptyline (Elavil)
  
• cimetidine (Tagamet)
  
• hydroxyzine (Vistaril)
  
• pentosan polysulfate (Elmiron)
  

Your doctor may also consider administering the following drugs by injection to your bladder:

• dimethyl sulfoxide (Rimso-50)
• heparin
• lidocaine

As an alternative to cauterization, your doctor may decide to inject the steroid drug triamcinolone at the site of a bladder ulcer.

Botox is a drug that paralyzes muscles when injected into them, and may be considered as a bladder treatment for IC when prior treatments are no longer adequate.

Cyclosporine, the last drug that is typically considered for IC, is an oral drug that suppresses the immune system. While it may provide symptom relief, it carries significant risks, including a generally higher risk of infection. (1,4)

Prevention of Interstitial Cystitis

Since the causes of interstitial cystitis are unclear, and the condition may have multiple causes, there aren’t any specific steps you can take to avoid IC in the first place.

But once you have IC, there are a number of lifestyle measures that may help reduce your symptoms.

Avoiding foods that cause bladder irritation may help relieve symptoms of interstitial cystitis.

Common bladder-irritating foods include:

• Tomatoes
• Citrus fruits
• Spicy foods
• Chocolate
• Coffee and caffeinated beverages
• Alcoholic beverages
• Carbonated beverages

Since so many foods can contribute to symptoms of interstitial cystitis, you may benefit from an elimination diet, in which you stop eating all potential irritant foods for one to two weeks. If your symptoms improve, you can then gradually reintroduce eliminated foods to see if they trigger any symptoms.

Emotional or mental stress can contribute to IC symptoms, so it’s important to identify potential sources of stress in your life and avoid or cope with them to the best of your ability. (1)

There isn’t a clear line between symptoms of interstitial cystitis and complications caused by the condition. What is clear is that IC can interrupt your life in a number of ways, including by leading to the following problems:

• Reduced bladder capacity
• Sexual dysfunction and intimacy problems
• Emotional stress and depression (5)

In about 5 to 10 percent of people with IC, Hunner’s ulcers develop on the bladder wall. People with these ulcers tend to have more severe symptoms. These ulcers can be treated through cauterization, steroid injections, or surgery.

Some people with IC also develop tiny areas of bleeding in the bladder wall, known as glomerulations. (2)

Historically, interstitial cystitis was considered to be a women’s issue that affected a small number of people. But the RAND Interstitial Cystitis Epidemiology Study (RICE) — the largest study of its kind on IC — revealed that the condition affects three million to eight million women in the United States. (6)

Between one million and four million men in the United States may also have IC, according to the Interstitial Cystitis Association. In fact, the number of men may be even higher than this, because men may be misdiagnosed with a different condition, such as chronic prostatitis. (2)

A number of different health conditions are associated with interstitial cystitis, meaning they’re also present in a person with IC.

For example, people with IC are potentially 100 times more likely to have irritable bowel syndrome than the general population, and 30 times more likely to have lupus, according to the Interstitial Cystitis Association.

Conditions associated with IC include the following:

• Irritable bowel syndrome
• Lupus
• Vulvodynia (chronic vulvar or vaginal pain)
• Fibromyalgia
• Chronic fatigue syndrome
• Allergies and asthma
• Endometriosis
• Migraine
• Sensitive skin
• Celiac disease
• Chronic prostatitis
• Constipation
• Pelvic floor dysfunction
• Pudendal neuralgia
• Sjögren’s syndrome (2)

The following organizations and websites offer information and support on interstitial cystitis and related health conditions.

Interstitial Cystitis Association

This nonprofit group is the only charitable organization dedicated to improving the lives of people with interstitial cystitis. Its website provides information on countless aspects of IC, online support groups and forums, virtual education resources, and tips for how to get involved in research or advocacy.

Urology Care Foundation

This website from the American Urological Association provides information on various health conditions, including IC, as well as an overview of the organization’s research efforts and tips for general urological health.

American Chronic Pain Association

This organization’s website provides an overview of different health conditions that can cause chronic pain, as well as online support groups for people with chronic pain and resources for dealing with pain.

International Pelvic Pain Society

This group aims to support people living with conditions that cause pelvic pain, and advocates for greater awareness and “interdisciplinary approaches” to evaluating and treating these conditions. Its website has information on meetings and membership, the group’s annual convention, and fundraising events (all of which follow a virtual format this year).

Bladder and Bowel Community

This website has articles on a wide range of topics related to bladder and bowel dysfunction, including helpful forms of exercise, mental health concerns, and problems that could be causing bladder symptoms.

Additional reporting by Chris Iliades, MD.