Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome.
Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it's full and then signals your brain that it's time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people.
With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.
Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there's no cure, medications and other therapies may offer relief.
The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise and sexual activity.
Interstitial cystitis signs and symptoms include:
Symptoms severity is different for everyone, and some people may experience symptom-free periods.
Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, there's usually no infection. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.
If you're experiencing chronic bladder pain or urinary urgency and frequency, contact your health care provider.
The exact cause of interstitial cystitis isn't known, but it's likely that many factors contribute. For instance, people with interstitial cystitis may also have a defect in the protective lining (epithelium) of the bladder. A leak in the epithelium may allow toxic substances in urine to irritate your bladder wall.
Other possible but unproven contributing factors include an autoimmune reaction, heredity, infection or allergy.
These factors are associated with a higher risk of interstitial cystitis:
Interstitial cystitis can result in a number of complications, including:
Diagnosis of interstitial cystitis might include:
No simple treatment eliminates the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.
Working with a physical therapist may relieve pelvic pain associated with muscle tenderness, restrictive connective tissue or muscle abnormalities in your pelvic floor.
Certain medicines that you take by mouth (oral medications) may improve signs and symptoms of interstitial cystitis:
Pentosan polysulfate sodium (Elmiron), which is approved by the Food and Drug Administration specifically for treating interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency.
Macular eye disease has been associated with use of this medication in some people. Before starting this treatment, you may need a comprehensive eye exam. You may also need additional eye exams to monitor for eye disease as you continue therapy.
Nerve stimulation techniques include:
Transcutaneous electrical nerve stimulation (TENS). With TENS, mild electrical pulses relieve pelvic pain and, in some cases, reduce urinary frequency. TENS may increase blood flow to the bladder. This may strengthen the muscles that help control the bladder or trigger the release of substances that block pain.
Electrical wires placed on your lower back or just above your pubic area deliver electrical pulses — the length of time and frequency of therapy depends on what works best for you.
Sacral nerve stimulation. Your sacral nerves are a primary link between the spinal cord and nerves in your bladder. Stimulating these nerves may reduce urinary urgency associated with interstitial cystitis.
With sacral nerve stimulation, a thin wire placed near the sacral nerves sends electrical impulses to your bladder, similar to what a pacemaker does for your heart. If the procedure decreases your symptoms, you may have a permanent device surgically implanted. This procedure doesn't manage pain from interstitial cystitis, but may help to relieve some symptoms of urinary frequency and urgency.
Some people notice a temporary improvement in symptoms after cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water. If you have long-term improvement, the procedure may be repeated.
Botulinum toxin A (Botox) may be injected into the bladder wall during bladder distention. But, this treatment option could lead to not being able to empty your bladder completely when you urinate. You may need to self-catheterize — be able to insert a tube into your own bladder to drain urine — after this treatment.
In bladder instillation, your provider places the prescription medication dimethyl sulfoxide (Rimso-50) into your bladder through a thin, flexible tube (catheter) inserted through the urethra.
The solution sometimes is mixed with other medications, such as a local anesthetic, and remains in your bladder for about 15 minutes. You urinate to expel the solution.
You might receive dimethyl sulfoxide — also called DMSO — treatment weekly for six to eight weeks, and then have maintenance treatments as needed — such as every couple of weeks, for up to one year.
Another approach to bladder instillation uses a solution containing the medications lidocaine, sodium bicarbonate, and either pentosan or heparin.
Doctors rarely use surgery to treat interstitial cystitis because removing the bladder doesn't relieve pain and can lead to other complications.
People with severe pain or those whose bladders can hold only very small volumes of urine are possible candidates for surgery, but usually only after other treatments fail and symptoms affect quality of life. Surgical options include:
Some people with interstitial cystitis find symptom relief from these strategies:
Dietary changes. Eliminating or reducing foods in your diet that irritate your bladder may help to relieve the discomfort of interstitial cystitis.
Common bladder irritants — known as the "four Cs" — include: carbonated beverages, caffeine in all forms (including chocolate), citrus products and food containing high concentrations of vitamin C. Consider avoiding similar foods, such as tomatoes, pickled foods, alcohol and spices. Artificial sweeteners may aggravate symptoms in some people.
If you think certain foods may irritate your bladder, try eliminating them from your diet. Reintroduce them one at a time and pay attention to which, if any, worsen symptoms.
Bladder training. Bladder training involves timed urination — going to the toilet according to the clock rather than waiting for the need to go. You start by urinating at set intervals, such as every half-hour — whether you have to go or not. Then you gradually wait longer between bathroom visits.
During bladder training, you may learn to control urinary urges by using relaxation techniques, such as breathing slowly and deeply or distracting yourself with another activity.
These self-care measures also may help:
Two complementary and alternative therapies show some promise in treating interstitial cystitis:
These treatments have not been well-studied for interstitial cystitis, so be sure to discuss the use of these therapies with your health care provider.
Interstitial cystitis can worsen your quality of life. Support from family and friends is important, but because the condition is a urinary problem, you may find the topic difficult to discuss.
Find a supportive health care provider who is concerned about your quality of life as well as your condition. Seek someone who will work with you to help relieve your urinary frequency, urgency and bladder pain.
You might also benefit from joining a support group. A support group can provide sympathetic listening and useful information. Ask your provider for information on support groups or see the Interstitial Cystitis Association on the web.
You may be asked to keep a bladder diary for a few days to record information, such as how often you urinate and how much and what kinds of fluid you consume.
For more testing, you may be referred to a specialist in urinary disorders (urologist) or urinary disorders in women (urogynecologist).
To get the most from your visit to your health care provider, prepare in advance:
For interstitial cystitis, some basic questions to ask include:
Make sure that you understand what your provider tells you. Don't hesitate to ask your provider to repeat information or to ask follow-up questions for clarification.
Be prepared to answer questions from your provider, such as:
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