What is Interstitial Cystitis/Bladder Pain Syndrome?

Symptoms

What are the Symptoms IC/BPS?

Pain

The symptoms of IC/BPS vary for each patient, but the most common sign is pain (often with pressure). Patients with IC/BPS may have bladder pain that gets worse as the bladder fills. Some patients feel pain in other areas in addition to the bladder, such as the urethra, lower abdomen, lower back, or the pelvic or perineal area (in women, behind the vagina and in men, behind the scrotum). Women may feel pain in the vulva or the vagina, and men may feel the pain in the scrotum, testicle, or penis. The pain may be constant or may come and go.

Frequency

IC/BPS sometimes starts with urinary frequency. Frequency is the need to pass urine more often than normal. The average person urinates no more than 7 times a day. He or she does not have to get up at night more than once to use the bathroom. A patient with IC/BPS often has to urinate frequently both day and night. As frequency becomes more severe, it leads to urgency.

Urgency

Urgency to urinate is a common IC/BPS symptom. Some patients feel an urge that never goes away, even right after voiding. A patient may not notice or see this as a problem. In other cases, the onset is much more dramatic, with severe symptoms occurring within days, weeks or months.

Many patients with IC/BPS can point to certain things that make their symptoms worse. For some, their symptoms are made worse by certain foods or drinks. Many patients find that symptoms are worse if they are under stress (either physical or mental). For women, the symptoms may vary with their period. Both men and women with IC/BPS can have sexual problems due to this health issue. Women may have pain during sex because the bladder is right in front of the vagina. Men may have painful orgasm or pain the next day. It is unusual to experience leaking of urine with this disorder, and urinary leaking might be a sign of another problem.

Who Gets IC/BPS?

Because there is no standard technique to diagnose IC/BPS, it is often hard to estimate the number of people affected. IC/BPS is typically 2 to 3 times more in common in women than in men, and data have shown the risk of IC/BPS increases with age.

The current estimate is that 1 to 4 million men and 3 to 8 million women have symptoms of IC/BPS. But the difference between men and women may not really be as high as we think, because some men diagnosed with "prostatitis" (swelling of the gland that makes semen in men) or similar conditions with different labels may really have IC/BPS. At this time, there is no evidence that stress causes IC/BPS in the first place. However, it is well-known that if a person has IC, physical or mental stress can make the symptoms worse.

How IC/BPS Can Affect Your Life

IC/BPS can get in the way of your social life, exercise and sleep, and can cause a great deal of distress. Without treatment, IC/BPS symptoms make it hard to get through your day or even be able to work. IC/BPS may affect your relationship with your spouse and family. It can also rob you of a good night's sleep. Too little sleep will leave you tired and unhappy.

Causes

What Causes IC/BPS?

Experts do not know exactly what causes IC/BPS, but there are many theories, such as:

  • A defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder.

  • A specific type of inflammatory cell, called a mast cell. This cell releases histamine and other chemicals that lead to IC/BPS symptoms.

  • Something in the urine that damages the bladder.

  • Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling).

  • The body's immune system attacks the bladder. This is similar to other autoimmune conditions..

No specific behaviors (such as smoking) are known to increase your risk of IC. Having a family member with IC/BPS may increase your risk of getting IC/BPS. Patients with IC/BPS may have a substance in the urine that inhibits the growth of cells in the bladder tissue. So, some people may be more likely to get IC/BPS after an injury to the bladder, such as an infection.

Diagnosis

How is IC/BPS Diagnosed?

At this time, there is no medical test that can say a person has IC/BPS. Also, there is no test to say a person does not have IC/BPS. To make a diagnosis, your health care provider will first decide whether the symptoms are typical of IC/BPS. Next, they need to rule out other health issues that might be causing the symptoms. Some believe that IC/BPS is present if a patient has symptoms and no other cause for those symptoms is found. Others believe that more tests are needed to find out whether the patient has IC/BPS.

Below are some ways your health care provider may find out if you have IC/BPS:

Medical History

Your health care provider will ask you a number of questions about:

  • symptoms you are having

  • how long you have had the symptoms

  • how symptoms are changing your life

  • past health problems

  • current health problems

  • over-the-counter and prescription drugs you are taking

  • your diet, and about how much and what kinds of liquids you drink during the day

Physical and Neurological Exam

Your health care provider will examine you to look for the cause of your symptoms. In women, the physical exam will likely include your abdomen, the organs in your pelvis, and your rectum. In men, a physical exam will include your abdomen, prostate, and rectum. Your health care provider may also do a neurological exam to rule out any other problems. Patients with IC/BPS may have other mental health and/or anxiety disorders which may be linked to their condition.

Baseline Pain and Voiding Tests

Since the hallmark sign of IC/BPS is pain, your health care provider will conduct tests and ask you to fill out a series of questionnaires to find out your baseline pain value. The goal of the evaluation is to find pain location(s), intensity, and characteristics, and to identify factors that make pain or discomfort better or worse. Your health care provider will also ask how often you void.. A very low voiding frequency or high voided volume should prompt your health care provider to look for some other urological condition beside IC/BPS.

Other Tests

Your health care provider may run other tests to rule out health issues that may seem like IC/BPS. These include:

Urodynamic evaluation: This involves filling the bladder with water through a small catheter (tube to drain fluid from the body). This measures bladder pressures as the bladder fills and empties. In patients with IC/BPS the bladder has a small capacity and perhaps pain with filling.

Cystoscopy: Using a special tool, your doctor looks inside the bladder. This test can rule out other problems such as cancer. The doctor can see actual ulcers through the cystoscope in some patients with IC/BPS. If a person has symptoms of IC/BPS and cystoscopy shows ulcers, the diagnosis is fairly certain. Cystoscopy can also be performed in the operating room. If bladder stones, tumors or ulcers are seen during cystoscopy, the doctor can take care of them at the same time as the bladder biopsy, which is used to rule out other bladder diseases.

At this time, there is no clear answer about the best way to diagnose IC/BPS. However, if a patient has typical symptoms and a negative urine exam showing no infection or blood, then IC/BPS should be suspected.

Treatment

What is the Treatment for IC/IBS?

No single treatment works for all people with IC/BPS.  Treatment must be chosen for each patient based on symptoms.  Patients usually try different treatments (or combinations of treatments) until good symptom relief occurs.  It is important to know that none of these IC/BPS treatments works right away.  It usually takes weeks to months before symptoms improve.  Even with successful treatment, the condition may not be cured.  It is simply in remission.  But, most patients can get significant relief of their symptoms and lead a normal life with treatment.  

Most treatments are aimed at symptom control.  IC/BPS treatment is often done in phases with constant monitoring of your pain and quality of life.  It is important to talk to your health care provider about how your treatments are working so that together you can find the best treatment option for you.   

The following are the different phases of IC/BPS treatment:  

After Treatment

What Can I Expect after Treatment?

After Initial Treatment

Most patients need to continue treatment indefinitely or the symptoms return.  Some patients have flare-ups of symptoms even while on treatment.  In some patients the symptoms gradually improve and even disappear.

Some patients do not respond to any IC/BPS therapy.  However, with pain management, they can still have significant improvement in quality of life.  Pain management can include other drugs, acupuncture, and other non-drug therapies. Professional pain management may often be helpful in more severe cases.  

Although most patients will find that their symptoms improve as they are treated for IC, not all patients will become fully symptom-free.  Many patients still have to pass urine more often than normal, or will have some degree of persistent discomfort and/or have to avoid certain foods or activities that make symptoms worse.  

Can IC/BPS Be Cured?

It is possible for IC/BPS symptoms to come back even if the disease has been in remission for a long time.  It is not known what causes a recurrence.  Also, there is no known guaranteed way to prevent recurrences.  Patients can try to prevent the return of symptoms by: 

  • staying on their medical treatments even after remission

  • avoiding certain foods that may irritate the bladder

  • avoiding certain activities or stresses that may make IC/BPS worse.

The specific foods or activities that affect IC/BPS are different for different patients, and so each person has to form his/her own individual plan.