Interstitial cystitis (IC) is a condition with symptoms including burning, pressure, and pain in the bladder along with urinary urgency and frequency. Other names for IC are bladder pain syndrome (BPS) and painful bladder syndrome (PBS).
IC occurs in 3 to 7 percent of women. Though it is more common in women, men are also affected. Women are usually diagnosed in their 40s, but younger and older women have IC, too.
Am I at Risk?
The cause of IC is unknown. It is likely due to a combination of factors or maybe different factors for different people.
IC runs in families. And so, if someone in your family has IC, you are more at risk for this chronic bladder pain condition.
Women with IC also appear to have some increased sensitivities. For example, for most people, the toxins found naturally in urine don’t bother them. However, for people with IC, a defect in the bladder lining may cause them to be more sensitive to these toxins and cause the pain and discomfort of IC.
Other research found that the nerves in and around the bladder of people with IC are hypersensitive. This may also be another reason for the severe and persistent bladder pain and discomfort.
Another theory is that an allergic component with the release of specific inflammatory cells known as mast cells occurs in the bladder and can lead to IC in some people. This inflammatory reaction is similar to people with other allergic conditions such as eczema and seasonal or environmental allergies. Allergies might be the reason some people with IC are bothered by certain foods as well. More studies are needed to test this theory.
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Symptoms of IC vary from woman to woman. However, most experience pain, pressure, and discomfort as the bladder fills. In addition, chronic pain or pressure in the pelvis and perineum are common. The perineum is the tissue (skin and muscles) located between the vagina and the anus. Many experience discomfort and pain during sexual intercourse or flares in their symptoms after intercourse. The severity of symptoms is variable.
Urinary urgency (“gotta go right now”) and urinary frequency (“gotta go often”) are common – both during the day and at night. Many women feel a constant need to empty their bladders to relieve the intensity of the pain. Women with IC rarely leak urine but go often to decrease pain. Some women note symptoms specifically in their urethra. The urethra is the tube from the bladder to the outside of the body that urine passes through during urination. For those with symptoms in the urethra, urinating can feel like “pushing sharp pieces of glass into tissue”.
IC flares are periods of extreme symptoms. Flares are common during the menstrual period. They also occur during times of emotional or physical stress. Also, certain foods and drinks may trigger flares.
A small proportion of women with IC have a specific type of lesion, known as a Hunner’s lesion. For these patients, cracks in the lining of the bladder are also often visible. These are usually seen after many years of having the condition, especially if inadequately treated. Hunner’s lesions are diagnosed on cystoscopy (a procedure that visualizes the inside of the bladder).
Unfortunately, there is nothing you can do to prevent IC. However, if you have IC, there are things that you can do to help manage your symptoms. Learn more about lifestyle steps you can take to help manage the pain and discomfort of IC.
To diagnose IC, your urologist or urogynecologist will review your medical history and symptoms. Your doctor will ask about your pattern and level of pain, as well as urinary symptoms. To help rule out other conditions, you may need some lab tests. Often you will be asked to keep a diary of your bladder symptoms, urination, and fluid intake. Women who are diagnosed with IC typically experience pain, burning, pressure, and discomfort in the bladder for more than six weeks with no other apparent cause. Some women go years with symptoms before diagnosis.
To help determine if you have IC, your doctor may use a lighted scope with a camera to look at the inside of the urethra and the bladder. This procedure is called a cystoscopy. When a cystoscopy is performed on women with IC, the bladder may appear inflamed and irritated. Cystoscopy in the office is usually easily tolerated but may be more uncomfortable for a patient with IC. For this reason, your surgeon might want to perform this test under anesthesia. Pinpoint sites of bleeding (glomerulations) can be seen on the bladder wall, especially after hydrodistention. These findings are NOT diagnostic for IC and can be found in other conditions.
During your evaluation, your doctor may want to perform a group of tests using a set of catheters connected to a computer to evaluate your bladder function in terms of filling and emptying. This test is called urodynamics. It is not used to diagnose IC. It is used to rule out other conditions that could be causing your symptoms.
IC treatments depend on the severity of the symptoms. Most women require more than one type of therapy to manage their pain and urinary symptoms. Right now, there is no cure for IC, but the symptoms can be treated and controlled. Sometimes a period of trial and error is required to figure out the best combination of treatments for you.
Women with IC often find that certain foods and drinks irritate their symptoms. In fact, one study found that 90% of patients with IC had food sensitivities. Identifying which items are bothersome to you and restricting or limiting them can help control symptoms. Food sensitivities can vary. However, there are foods and beverages that appear to trigger a flare among many women. Often women eliminate these foods and slowly add them back individually to determine which ones they can still eat safely. It’s helpful to meet with a Registered Dietitian Nutritionist to identify individual trigger foods.
Most Bothersome Foods and Drinks
Grapefruits and grapefruit juice
Oranges and orange juice
Pineapples and pineapple juice
Tomatoes and tomato products
Coffee (caffeinated and decaffeinated)
Tea (caffeinated and some decaffeinated)
Carbonated drinks (cola, non-cola, diet, caffeine-free)
Wine (red and white)
For most women, stress can worsen IC symptoms. Find an activity that relaxes you. It might be meditation, yoga, hypnosis, acupuncture, or taking a walk. Whatever it is, schedule time so you can help manage stress. In some cases, seeking professional psychological care is beneficial for patients with IC.
A specially trained physical therapist (PT) can manually maneuver your pelvic area to help relieve pelvic pain. This therapy may loosen tight pelvic floor muscles and tissues. Women with IC should NOT do pelvic floor strengthening exercises (called Kegel Exercises) unless under the care of a PT. These exercises can worsen symptoms.
Your provider may prescribe one or a combination of medicines. Pentosan polysulfate sodium (ElmironTM) is the only FDA-approved oral medicine for IC. It helps about one third of women control their symptoms. Other drugs that may help include:
Some find it helpful to get medicine inserted directly into their bladders. A series of these bladder instillations is usually done in the office. Treatments can be 1 to 2 times a week for 6 to 8 weeks.
Cystoscopy Under Anesthesia
Simple cystoscopy in the office can be more uncomfortable for IC patients than other people. If done with sedation, Hunner’s lesions or epithelial cracks can be treated with cautery or injected with steroids for symptomatic relief. In addition, stretching the bladder wall, called hydrodistension, can also be helpful. Because this can be painful, it is often performed as an outpatient surgery with general anesthesia. This procedure provides relief for some women, but in others, it may actually cause a flare immediately afterward.
Electrical stimulation devices can be placed outside of your body (TENS unit) or surgically implanted inside the body for sacral nerve modulation (call InterStim). They intercept the pelvic nerves that control and affect the bladder, urethra and pelvic floor. Sacral nerve modulation may relieve IC symptoms, specifically the urinary symptoms of urinary frequency and urgency.
Botulinum Toxin (Botox)
Botox can increase bladder capacity, which can help a patient with IC urinate less often. Using local anesthetic or sedation, your doctor uses a small camera (cystoscopy) and a needle to inject Botox into the bladder wall. Typically, the injection needs to be repeated 1 to 2 times a year. A small number of women experience side effects, such as difficulty emptying the bladder or urinary tract infection.
Surgery is reserved for the rarest and most extreme cases. Most women never need surgery. In these cases, the bladder can be removed or enlarged using the bowel to make a new bladder.