Interstitial Cystitis Frequently Asked Questions

Interstitial cystitis (IC) is a chronic inflammation of the bladder that causes pain and discomfort. Symptoms can include a sense of urgency and increased frequency of urination.

Inflammation associated with IC causes the lining of the bladder to scar and the bladder to stiffen, affecting the way the bladder expands when it fills with urine.

In about 90% of cases, there is bleeding visible in the lining. In about 10% of cases, there are ulcers or sores called Hunner’s ulcers.

IC can causes mild to severe pain in the bladder, as well as the pelvic area. In women, the pain tends to worsen during menstruation and they may also experience painful intercourse. Men may have painful ejaculations and even erectile dysfunction.

The symptoms go away spontaneously in about 50% of cases, but in nearly all return after an average of 8 months.

In the UK, it is thought that over 400,000 people suffer from interstitial cystitis. Generally, a healthy adult does not urinate more than 7 times a day and will rarely need to get up to go to the toilet in the middle of the night. However, some suffering from severe IC, may need to urinate as often as 60 times in 24hrs, including in the night. Although IC has no cure, there are several treatment options available to ease symptoms and help patients manage their lives better.

IC can develop at any age, but it is more likely to develop in middle age and is more common in women. Many people with IC also have conditions such as fibromyalgia or IBS. Other than being female, there aren’t any known factors that increase the risk of developing IC and there is no known way to prevent it or the symptoms from recurring after it goes into remission.

No one really knows what causes IC and because it varies from person to person, specialists believe there may be multiple causes such as:

• A defect in the lining of the bladder, which allows harmful substances found in urine to come into contact with the bladder wall.
• Changes in nerves inside the bladder.
• An overproduction of histamine or other potentially harmful chemicals by mast cells (a special type of cell that is involved in allergic reactions).
• An autoimmune response, whereby the body attacks its own organs and tissue.

The urine of people with IC contains a substance known as antiproliferative factor (APF), which appears to block the development of cells in the bladder lining. Therefore it could be that some people are predisposed to get interstitial cystitis after an infection or injury to the bladder

Symptoms of interstitial cystitis vary from individual to individual. Some people may have only a mild sense of urgency while others have multiple symptoms. Any of the following symptoms could indicate the presence of IC:

• Pain ranging from mild to intense in the bladder and surrounding pelvic region and perineum – the area between the anus and vagina in women and the anus and scrotum in men.
• Urgent need to urinate, even if only small amounts of urine are present.
• Frequent need to urinate.
• Pain that worsens during menstruation in women.
• Painful sexual intercourse in women.
• Pain or discomfort in the scrotum or penis in me

There is no one test that is specific for interstitial cystitis. Because other conditions can cause the same symptoms, a diagnosis is made only after other possible causes are ruled out. Other conditions that can cause the same symptoms include:

• bladder cancer
• chronic prostatitis in men
• endometriosis
• kidney stones
• sexually transmitted infection
• urinary tract infection
• vaginal infection

The doctor will start by asking you about your symptoms. Then the doctor will give you a physical examination and arrange a series of tests to rule out other possible causes. Those tests include:

• Urine analysis and urine culture. This involves dipstick testing a sample of urine and having the urine examined in the lab. Red and white blood cells and bacteria in the urine can indicate an infection. If the urine is sterile while symptoms persist, the doctor may suspect IC.
• Ultrasound. An imaging test is performed to visualise inner organs such as the bladder, kidneys and ureters.
• Cystoscopy with bladder distention. With this test, a specialist looks at the inside of your bladder using a cystoscope. That’s a hollow tube with a light and lenses that the doctor inserts through the urethra, the tube that urine passes through when you urinate. During the examination, the specialist may fill the bladder with a liquid or gas to distend or stretch it. This allows a better view of the walls and makes it easier to check for abnormalities. Because distension is painful, this procedure is done with some form of anaesthesia.
• Biopsy. During the cystoscopy, the specialist may take a small sample of tissue to examine under a microscope to rule out bladder cancer. Having IC does not increase your risk for bladder cancer.

Because there is no cure for interstitial cystitis, the goal of treatment is to relieve symptoms. Not everyone with IC responds the same way to the same treatment. What works for one person may not work for another. In addition, IC treatments generally take several weeks to several months to provide relief. When you discuss your treatment options, your doctor will help you decide which one might work best for you. Treatment options include:

• Bladder distension. Some patients report feeling better after the bladder distension used during diagnosis. Symptoms often worsen within the first two days after distension. However, they return to pre-distension levels or improve within two to four weeks. It isn’t clear why distension causes symptom relief in some people. It may be that distension increases the capacity of the bladder, or it may be that it interrupts the pain signals.
• Bladder instillation. This is also called a bladder wash or bath. A catheter is used to fill the bladder with a solution containing a medication to reduce the bladder wall inflammation. The solution is held in the bladder for an average of 10 to 15 minutes before the bladder is emptied. Treatment is given either every week or every other week for a period of six to eight weeks and then repeated as needed. Improvement is usually seen three to four weeks after the first six- or eight-week cycle.
• Oral medications. The doctor may suggest aspirin and ibuprofen as well as prescription medicines to help control pain. The doctor may also prescribe an antidepressant or an antihistamine. Both have been effective in treating IC. The oral contraceptive pill can improve symptoms in some women.
• Electrical nerve stimulation. Sometimes mild electrical pulses are used to stimulate nerves to the bladder. This may increase blood flow to the bladder, strengthen the bladder muscles and trigger chemicals that block pain. The impulses are sent through the skin using a TENS machine through wires placed on the lower back or just above the pubic area. TENS stands for “transcutaneous electrical nerve stimulation”. The electrical impulse can also be delivered using a special device inserted into the vagina for women or into the rectum for men. If nerve stimulation works, there is a device that can be implanted under the skin to deliver regular impulses to the bladder.

None of the IC treatments work immediately, and it can take weeks or months before the symptoms improve. Because interstitial cystitis is a chronic condition, most patients need to continue treatment indefinitely to keep the symptoms from returning. It’s also important to note that not all patients will become symptom-free. Many still have an issue with frequency or with some level of persistent discomfort.

There are several things you can do on your own or with the help of a physiotherapist that can improve your symptoms.

• Modify your diet. There is no evidence that any foods cause IC, but some people find that certain foods will trigger a flare-up of symptoms. Those foods include alcohol, tomatoes, spices, chocolate, caffeinated and citrus drinks, high-acid foods and foods with artificial sweetener. Keeping a food diary and recording when your symptoms flare up can help you identify foods that may cause your symptoms to get worse. You might also try an elimination diet by removing all foods from your diet that could cause bladder problems. Then, after a couple of days, start adding the foods back in one food at a time. Pay attention to how your bladder reacts to the food. Elimination diets are best done under the supervision of a healthcare professional.
• Work with a physiotherapist to learn exercises that can strengthen and relax the pelvic floor. Some people find that routinely doing a series of gentle stretching exercises provides symptom relief.
• Retrain your bladder. You may be able to reduce frequency by keeping a bladder diary and relieving yourself at regular intervals, using relaxation and distractions to stay on schedule. Then when you are able to stay on the schedule, you can gradually increase the length of time between urination.