Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic, debilitating bladder disease.¹ IC/BPS symptoms result in poor quality of life with sleep dysfunction, sexual dysfunction, depression, anxiety, and stress.² Stress increases symptoms of pain and urgency in patients with IC/BPS.^3,4 Family relationships and responsibilities were adversely affected in 70% of IC/BPS patients according to one survey.³ Employment is difficult or impossible in 84% of IC patients.³ Many patients have persistent symptoms despite a variety of treatments. Narcotics are the most commonly prescribed class of medications for this condition.⁵ The direct cost of medical care for an IC patient is more than $11,000 per year.⁶ In 2011, the American Urological Association (AUA) provided guidelines for the diagnosis and treatment of IC/BPS.⁷ The recommendation is that IC/BPS is best managed through the use of a logical algorithm. Treatment strategies should proceed using the more conservative therapies first. The first-line treatments should be performed on all patients and include patient education, self-care practices, behavior modifications, stress management, and coping techniques. However, the AUA guidelines offer limited explanation or references. 

Like arthritis, diabetes, and heart disease, IC/BPS is a long-lasting condition that can be controlled but not cured.⁸ Chronic diseases such as these are among the most common and costly health problems, but they are also the most preventable and ­effectively treated diseases. In 2005, 133 million Americans (almost one out of every two adults) had at least one chronic disease.⁹ Chronic diseases are the leading cause of death and disability in the United States, accounting for 70% of all deaths.¹⁰ Aside from causing physical suffering, chronic diseases place an enormous economic burden on our society. They account for $3 of every $4 spent on health care.¹¹ With an aging population, the incidence of chronic diseases will continue to rise. Because of the enormous human suffering and societal costs, much time and money has recently been expended on research, education, and pharmaceutical development for most chronic diseases. The human suffering and societal costs of IC/BPS warrant a similar standard of care.

AUA Guideline Statements

Treatments that may be offered are divided into the first-, ­second-, third-, fourth-, fifth-, and sixth-line groups based on the balance between potential benefits to the patient, potential severity of adverse events and the reversibility of the treatment.⁷

First-Line Treatments

Patient Education.

Patients should be educated about normal bladder function, what is known and not known about IC/BPS, the benefits versus risks/burdens of the available treatment alternatives, the fact that no single treatment has been found effective for the majority of patients, and the fact that acceptable symptom control may require trials of multiple therapeutic options (including combination therapy) before it is achieved.⁷

This statement makes clear that IC/BPS warrants a great deal of patient education. Still, patients with IC/BPS reported having the greatest need while being least satisfied with the level of support and information they currently receive.¹² These patients were unaware of many types of self-help, and yet almost all would use many of the resources if they were available. Patients who used self-help claimed that books and support groups were the most useful. IC/BPS patients experience different symptoms in diverse social situations, so appropriate medical education that fits an individual’s particular needs must be emphasized.

The first step in patient education is explaining that IC/BPS is a disease caused by the inflammation of the bladder or a syndrome of pelvic pain related to the bladder. The bladder’s function is to store urine and periodically release urine at socially acceptable times. This pelvic pain encompasses a broad array of descriptors from discomfort to pressure.¹³ IC/BPS causes an increased and more frequent sensation of the need to void. Pelvic pain can be in the bladder, urethra, vulva, vagina, male genitalia, rectum, or lower back. The whole patient must be evaluated, his or her problems prioritized, and education, advice, and support provided.

Generally, fluid intake increases frequency of urination. IC/BPS patients naturally limit fluid intake to decrease pelvic discomfort and urinary frequency. However, adequate and sustained water intake dilutes irritants and toxins in the urine. Adequate fluid intake flushes the bladder and may help prevent urinary tract infections. Adequate hydration reduces constipation, which can also exacerbate the symptoms of IC/BPS.

What is known or not known about IC/BPS and the benefits versus risks and burdens of available medical treatment is beyond the capacity of this article. A review of the ­evidence-based medical treatment of IC/BPS is available elsewhere.¹⁴

To maintain a working relationship, patient and physician expectations must be realistic and therapies mutually agreed upon. Patients need to be aware that no single treatment may be effective, and multiple therapeutic trials may be necessary for acceptable symptom control.^15,16

Self-care Practices and Behavior Modifications. Patients should be made aware of specific behaviors that may improve or worsen IC/BPS symptoms.¹⁵ These therapies are usually risk free and inexpensive. Application of either hot or cold packs to the suprapubic or perineal area or taking a warm sitz bath may relieve IC/BPS discomfort. Restricting consumption of coffee, citrus products, chocolate, alcohol, and spicy foods is a commonly used IC/BPS self-care strategy.¹⁷ Elimination diets help determine which foods or fluids affect each individual patient. Behavior ­modification therapy includes pelvic floor muscle relaxation by placing knees against the chest, reclining with spread legs, or squatting. For patients in whom urinary frequency predominates instead of pain, keeping voiding diaries, controlling fluid intake, and pelvic floor exercises can increase voiding intervals.^18,19 Carrico and colleagues²⁰ had IC/BPS patients watch a guided imagery compact disc that focused on bladder healing, pelvic floor muscle relaxation, and quieting nerves involved in IC/BPS with improvement in symptoms. Behaviors that may worsen symptoms include pelvic floor muscle exercises, sexual intercourse, and wearing tight fitting clothing. 

Over-the-counter medications for the treatment of IC/BPS have not been adequately studied in randomized, placebo-controlled studies. The bioflavonoid quercetin, in an open-label study, showed that most IC/BPS patients had some improvement in outcome measures.²¹ Calcium glyerophosphate reduces titratable acids in foods and prevented food-related flares in IC/BPS.²² Phenazopyridine hydrochloride is a urinary analgesic that can be helpful for the short-term management of an IC/BPS flare.¹⁶

Stress Management Practices and Improving Coping Techniques. 

Stress is the most significant flare factor for IC/BPS symptoms.²³ Stress reduction management aids in diminution of severe symptoms and is a preventive measure for patients in remission. Higher stress levels were related to greater urgency and pain in IC/BPS patients.²⁴ Behavior modification techniques such as exercise, bathing, meditation, shortening work hours, creating a nonstressful environment at home, or joining educational programs and patient support groups help to maintain a reduced stress level.^20,25

Patients should be encouraged to learn positive coping techniques to lessen the inconveniences of daily activity. Clinical interventions that encourage patients to take an active role in managing their lives and make adjustments to the disease may improve their quality of life.²³ Research on other chronic pain disorders demonstrates a relationship between coping abilities and the extent of depression and functional disability.²⁶

Catastrophic thinking is a negative coping strategy in which one believes the worst may happen and the result will not be tolerable. Patients who catastrophize feel helpless and obsess about their conditions. Greater catastrophizing by IC/BPS patients was associated with depression, greater pain, and poorer social functioning.²⁷ Patients with chronic pain who avoid catastrophizing appear to be more functional.²⁶

Venting is another negative coping strategy that focuses attention on personal distress and expresses negative emotions. Venting about IC/BPS symptoms prolonged depressive symptoms and was related to higher levels of distress.²⁷

Seeking emotional social support is a positive coping strategy that is associated with better health in chronically ill patients.²⁸ This includes support from spouses, family, friends, IC/BPS support groups, and professionals in the health care field. Patients with IC/BPS who sought emotional support, talked about their feelings, and solicited empathy from others saw some benefits, especially during an IC/BPS flare.²⁹  Patients with IC/BPS who sought advice or information from others had decreased feelings of isolation, increased sense of control, and fewer depressive symptoms.²⁷  

The severity of IC/BPS had a direct correlation with coping strategies of catastrophic thinking, seeking social support, and venting.²⁷ Catastrophizing and venting were associated with more depression, physical pain, and a decreased ability to cope. Seeking social support resulted in better mental health, less discomfort, and an overall better quality of life. These finding are consistent with other studies of chronic diseases. As Bury³⁰ notes, “Coping… has been seen to be an important buffer against the stress of chronic illness.” 

Treating IC/BPS as a Chronic Disease 

Despite the AUA guidelines, the current medical model still focuses on the treatment of the disease rather than its prevention. This is clearly not the entire answer. Although the clinical approach to medicine is important, it is not always complete. It is imperative that we consider both the social and environmental factors of chronic diseases for a more thorough understanding of their causes as well as methods to treat and prevent them. Historical evidence supports the contention that social issues most profoundly impact the health of a society. Better living conditions, a clean environment, proper nutrition and hygiene, and a safe work environment are key determinants of the health of a nation. Social stress, family environment, and social support are all factors that can produce or alleviate ill health. It is time to consider IC/BPS in the larger context of the medical, social, and physical environment in which we live.  

McKinlay³¹ reports a story told by his friend Irving Zola: 

A physician is standing on the shore of a river, and hears the cries of a drowning man. He quickly jumps in to save the man, and he drags him to shore and applies artificial respiration. Just when he begins to breathe, another man cries for help. So he jumps in again and drags the next man to shore and applies artificial respiration. Just when that man begins to breathe, there is another cry for help. This happens again and again and again. 

This is the story of how a physician explains the current practice of medicine. The physician concludes, “I am so busy jumping in, I have no time to see who the hell is upstream pushing them all in.” This story is significant for IC/BPS in more ways than one. First, physicians are too preoccupied with addressing acute problems, rather than investigating the cause, exacerbating factors, or prevention of the disease. Past medical practice is to take the “downstream approach” of treating people after they become sick, rather than the “upstream” approach of focusing on environmental and social causes or contributing factors of disease. Second, this is an issue that physicians, or even the medical field, cannot address alone. The health care industry and the US government must use their expertise and money to drive research, education, and pharmaceutical development to prevent, treat, and cure
IC/BPS.  

Autoimmunity is one of the proposed causes of IC/BPS. Like autoimmune diseases, IC/BPS affects more women than men. Stress worsens both conditions.³² There is a clinical concordance of IC/BPS with other established autoimmune diseases.³³ The incidence of autoimmune diseases has been increasing in the United States.³⁴ This suggests environmental factors are at play, as genes do not change in such a short period of time.Environmental exposures play a role in triggering autoimmune processes,³⁵ such as how gluten ingestion causes autoimmune celiac disease. Yamada³⁶ reported that 80% of young IC/BPS patients have complications of allergic disease. Allergies are caused by environmental exposure to compounds such as mold, pollen, and an ever increasing number of industrial chemicals. Shorter and colleagues¹⁷ reported that 90% of patients with IC/BPS reported exacerbations of symptoms following ingestion of specific foods. Lifestyles are changing with more consumption of processed food. If IC/BPS is indeed an autoimmune disease, understanding the environmental factors that trigger and exacerbate the disease will be important for treatment and prevention.

Physicians need to take a different approach when caring for IC/BPS patients. They must view IC/BPS as a chronic disease ­requiring a long-term health care plan. They must view themselves as “healers” instead of physicians or surgeons. Validation of the disease is important to patients as many have lived with IC/BPS symptoms for years. Patients are reassured to learn that they are not the only persons with these symptoms, that they are experiencing a well-described syndrome, and that the disease is not life threatening. Physicians need to be aware of the social and environmental factors that exacerbate this disease. Both medical and social treatment options should be utilized in their care. IC/BPS advice concerning diet, bowel function, sexual activity, and stress reduction must be part of standard care. Physician advice and support combined with patient lifestyle changes can have a significant positive effect on quality of life for IC/BPS sufferers.

Conclusions

The AUA guideline for the diagnosis and treatment of IC/BPS ­identifies a management strategy. First-line treatments should be performed on all patients and includes patient education, self-care practices, behavior modifications, stress management, and coping techniques. This management strategy is important as the past medical model of trial and error of various drug regimens for the treatment of IC/BPS was inadequate. However, physicians need to go a step further in the care of IC/BPS patients. Strategic management should include treating IC/BPS as a chronic disease, recognizing all the components of this disease, appreciating the social and environmental ­factors that cause and exacerbate IC/BPS, and offering both medical and social treatment options. It is time for IC/BPS to be treated with health care, rather than medical care only, for the optimal well-being of IC/BPS sufferers.   

The authors report no real or apparent conflicts of interest.

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