It’s a condition as complex as its name: interstitial cystitis/bladder pain syndrome (IC/BPS).
If you have chronic pelvic pain and often feel the need to urinate urgently and frequently, you might be one of the estimated 5 million Americans affected by the condition’s symptoms. “IC/BPS can be debilitating, making normal social functioning seem impossible for those with severe cases and causing sleep deprivation because of multiple nighttime awakenings,” says John W. Warren, M.D., professor of medicine at the University of Maryland School of Medicine in Baltimore, who has extensively researched interstitial cystitis and its causes. “Some researchers suspect IC/BPS may be one manifestation of a disease process that goes beyond the bladder. Others believe it isn’t one disease but instead several.”
A broad spectrum of symptoms
IC/BPS symptoms and their severity vary widely from person to person and can come and go in each individual. More women than men are diagnosed with IC/BPS; a 2009 study suggested that prevalence in women increases with age.
All people with IC/BPS experience some discomfort that can be attributed to the bladder. You may have mild or intense pain, burning, tenderness, spasms or pressure in your pelvic region, which includes the bladder and urethra (the tube that passes urine out of the body), or in your lower abdomen. Additionally, men may feel pain in the testicles, scrotum, and penis tip and may experience painful ejaculation and urination.
These symptoms are often accompanied by urinary urgency and frequency— even if your bladder isn’t full—and excessive nighttime urination. Some people with severe IC/BPS may need to urinate up to 60 times a day. Urinating typically relieves discomfort. You may also experience “flares” when your symptoms get worse, which can last for hours, days or weeks. Certain foods and beverages, sexual intercourse, long periods of sitting, menstruation, and stress can exacerbate symptoms.
IC/BPS has two main subtypes:
1. Nonulcerative: Most people with IC/BPS have a normal-appearing bladder.
2. Ulcerative: Five to 10 percent of IC/BPS patients have the ulcerative form, characterized by areas of inflammation, called Hunner’s ulcers, on the bladder wall.
The complexities of diagnosis
Because there’s no definitive test for IC/ BPS, your doctor must make the diagnosis based on your symptoms and by ruling out other reasons for your symptoms, such as a urinary tract infection (UTI), bladder cancer, chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) in men or endometriosis in women.
While UTIs have similar symptoms, people with IC/ BPS usually don’t have bacteria in their urine, a telltale sign of a UTI. If a urine test rules out a UTI, your doctor may perform a cystoscopy to rule out other conditions or look for Hunner’s ulcers, although the procedure isn’t necessary to make an IC/BPS diagnosis. While performing a cystoscopy, your doctor will thread a thin tube with a tiny camera on its end through the urethra to view the inside of your bladder.
IC/BPS in men is difficult to distinguish from conditions such as CP/CPPS, prostate infection and benign prostatic hyperplasia (an enlarged prostate) because they have similar symptoms. Some experts think that interstitial cystitis and CP/CPPS are the same condition. They also suspect that interstitial cystitis is often misdiagnosed as CP/CPPS. Men who don’t respond to CP/CPPS therapy may want to consider trying an IC/BPS treatment.
Pinpointing the cause
Why IC/BPS occurs remains unclear. Some experts suspect abnormal changes in the bladder’s lining may cause IC/ BPS. The condition is sometimes preceded by an uncomplicated UTI. Research by Warren and others has shown that people with certain chronic conditions, such as fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome, are more likely to have IC/ BPS and vice versa. These conditions, known as functional somatic syndromes, cause symptoms and disability without a clear-cut biological explanation. Because of this association, some researchers believe IC/BPS may itself be a functional somatic syndrome.
“A person who has a functional somatic syndrome is at higher risk for another, which suggests they’re somehow related,” Warren says. “If IC/BPS is a functional somatic syndrome, then research into the causes, treatments, and prevention of other functional somatic syndromes might apply to IC/BPS, too.”
Although each functional somatic syndrome is unique, each shares some common symptoms, such as fatigue, depression, and pain, says Warren, who reported the similarities in the Journal of Psychosomatic Research in December 2014.
IC/BPS has no cure, so treatment is focused on managing symptoms. You may need to try several therapies before finding one or a combination of several (called multimodal therapy) that works for you. First-line treatment usually begins with self-care, such as modifying your diet, training your bladder to void on a schedule, controlling fluid intake, and managing stress. If these measures don’t help, other strategies include physical therapy to relax abdominal, groin, and buttock muscles; gentle stretching exercises to lessen symptoms; and analgesics such as aspirin or ibuprofen to relieve pain during flares.
Prescription medications ease symptoms in some people when self-care doesn’t work. Pentosan polysulfate sodium (Elmiron) is thought to aid in healing the bladder’s lining. Cimetidine (Tagamet) and certain antidepressants and antihistamines may provide symptom relief.
If you have tried multiple treatments without success, other procedures may help, but it’s important to discuss them at length with your doctor and understand their risks for complications and adverse effects.
Bladder instillation, also called a bladder bath, uses a medicated solution to wash out the bladder in an effort to reduce inflammation and relieve pain. Bladder distention, which is performed during a cystoscopy, stretches the bladder and sometimes results in symptom improvement. Laser surgery can be performed to remove or destroy Hunner’s ulcers.
If discomfort persists and significantly affects your quality of life, your doctor may suggest botulinum toxin A (Botox) injections into the bladder muscle to control symptoms. Another option is transcutaneous electrical nerve stimulation (TENS), which sends electrical signals to block pain. TENS is delivered using either an external device held against the skin in the back or pelvic area or a device implanted underneath the skin. If these procedures don’t help, the immunosuppressant drug cyclosporine may be considered. However, this potent drug has a high risk of serious side effects, including a weakened immune system and kidney damage.
As a last resort—when all else has failed and pain is disabling—several complex surgical procedures, including bladder enlargement, urinary diversion or, more drastically, full or partial bladder removal, may be considered, but complications and side effects must be carefully weighed against benefits—and symptom relief isn’t guaranteed.
If you think you may have IC/BPS, talk with your doctor. For more information and support, visit the Interstitial Cystitis Association’s website.
Trigger foods to avoid
Some foods can trigger symptoms of interstitial cystitis/bladder pain syndrome. These foods include:
■ Coffee and other caffeinated beverages
■ Citrus fruits and juices
■ Cranberry juice
■ Artificial sweeteners (aspartame and saccharin)
■ Carbonated beverages (soda)
■ Spicy foods
An elimination diet, in which you avoid suspect foods for two weeks to a month, can help determine whether a particular food triggers your symptoms. After eliminating possible triggers, you’ll add foods back individually, one food per week. By isolating foods, you’ll be better able to pinpoint those that cause trouble for you and remove them from your diet.