Interstitial Cystitis or Painful Bladder Syndrome (IC/PBS) is a condition that involves pain in the pelvis or lower abdomen, as well as urinary symptoms. It is four times more likely to occur in women than in men. It is often seen with fibromyalgia or similar disorders. Symptoms can range from very mild to very disabling. Often those with the condition will experience periods where they have few symptoms. As with most painful conditions, it tends to be worse right before and during a woman's menstrual period.
Signs and symptoms
- pressure or pain in the lower abdomen and pelvis, particularly over the bladder
- pain may become worse as the bladder fills, or as it empties
- urgent need to urinate
- urinating often
- pain with urinating
- pain with sex
The cause of IC/PBS is not clear. There is no infection present. There is no increased risk of cancer. The condition often occurs with disorders like fibromyalgia, irritable bowel syndrome, and temporomandibular joint dysfunction. This leads researchers to suspect that it is a sign in the bladder of a larger problem in the nervous system. Many (but not all) patients with IC/PBS have an abnormal protective barrier layer of the bladder wall. This may allow toxins to "leak" into the tissue.
It is not known whether this is the cause or result of IC. It is part of the vicious cycle seen. The cause of IC is thought to be a neuroinflammatory process. This means a complex interaction between the nervous system and the lining of the bladder.
A urine sample will be needed to look for urinary tract infection. Often women with IC/PBS will be treated many times with antibiotics, because the symptoms are similar to a bladder infection. In fact, no infection is present. Sometimes, an ultrasound will be done to make sure there are no abnormalities in the kidneys, ureters, bladder, or urethra. If symptoms are severe, some people will be referred to a urologist, who may do a cystoscopy to look at the inside of the bladder. There are changes to the wall of the bladder that are very typical of IC/PBS.
For many patients, symptoms are mild, and sometimes go away for long periods. If treatment is needed, it should start with some basic lifestyle changes.
Many patients find that certain kinds of foods irritate their bladder. These include spicy foods, citrus fruits, tomatoes, alcohol, and coffee or tea. Patients also tend to respond better to treatment if they can stop smoking.
Since IC is a complex problem, it often needs multiple approaches to remain under control.
Some patients will have their bladder distended at the time of cystoscopy in order to help with diagnosis. For some reason, many people find that this procedure helps the pain. It may be that it interferes with the way that nerves in the bladder wall transmit pain. Sometimes, urologists will schedule this procedure even after the diagnosis is made, just to help the pain.
At the same time, one of a number of drugs may be instilled into the bladder with a catheter.
- Pentosan polysulfate (Elmiron) is a drug that is commonly used to manage pain from IC/PBS. It may help the bladder wall to heal. It takes several months to have its full effect. It is useful for mild to moderate IC.
- Ibuprofen or acetaminophen (Tylenol) may be used for mild flares of pain.
- Tricyclic antidepressants have been used to reduce pain intensity and decrease how often you void. Other medicines with similar effects on the anticholinergic system can be used to try to increase bladder capacity and decrease frequency of urination.
- Antihistamines are helpful for many people, to reduce pain. They are often somewhat sedating (make you feel tired or groggy), so are best taken at night.
- In a select group of people, opioid medicines are helpful to improve function - although they will likely not eliminate the pain.
Physiotherapy with a therapist trained to work with the muscles of the pelvic floor can be useful. Sometimes, the pain in the pelvis causes the muscles of the pelvic floor to become tense and sore. This causes pain itself. It makes IC/PBS worse. It makes sex more difficult. There is a list of pelvic physiotherapists elsewhere on this site.
Acupuncture and TENS
Some patients find things like acupuncture or transcutaneous electrical nerve stimulation (TENS) helpful as well.
There are implantable nerve stimulators that have been tested in IC/PBS as well. This may be an option for some patients. While surgery has been tried for this condition, it has never been proven to improve symptoms. It also has the potential for serious side effects.
Studies have shown that non-drug therapies can help to reduce pain levels and enhance pain coping. These include:
- activity pacing
- cognitive behavioural therapy
These self-management strategies can help you to improve your function so you can do more and enjoy life more.
For more information
Interstitial Cystitis Association
American Pain Foundation
TRIP Database (Resources for Evidence Based Medicine)
Interstitial Cystitis Network
Urologyhealth.org (American Urological Association Foundation)
Healthywomen.org (National Women’s Health Resource Center)
National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Interstitial cystitis/painful bladder syndrome. http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/>. National Institutes of Health NIH Publication No. 08–3220, April 2008.
Metts JF. Interstitial cystitis: Urgency and frequency syndrome. ,American Family Physician. October 1, 2001. Available online at: http://www.aafp.org/afp/20011001/1199.html. Last accessed on March 2, 2009.