Interstitial Cystitis (IC) also know referred to as Painful Bladder Syndrome (PBS) is a chronic, inflammatory condition of the bladder which is characterized by symptoms of urinary urgency, urinary frequency, dysuria (painful urination), nocturia (night urination), dispareunia (painful intercourse), and pelvic pain. The symptoms are much like that of a urinary tract infection, however, it is not caused by bacteria, therefore not relieved by antibiotic treatment. Only a small percentage of IC patients also have painful ulcers in the lining of the bladder, the most severe of these are termed Hunner's ulcers.
Who gets IC/PBS?
IC appears to be more common in women than in men; current studies estimate that 1 in 4 or 5 women and 1 in 20 men have symptoms of IC. According to the Interstitial Cystitis Association, IC affects people of any age or race, however some researchers have found that the average age at the time of diagnosis is 40, and 80-90% that seek treatment are Caucasian women. IC is more prevalent than was previously thought.
How is IC/PBS diagnosed?
Although great strides have been made in the last few years to have a single diagnostic approach to IC, it still remains physician specific. There are currently several ways that IC is diagnosed, however with all patients it is important to get a patient history and negative urine cultures. Until recently, IC was usually diagnosed through performing a cystoscopy, either with hydrodistention under general anesthesia, or without during a routine office visit. Previous diagnostic criteria required a cystoscopy in order to confirm changes in the blood vessels or ulcers in the bladder. More recent diagnostic tools include the Pelvic Pain and Urgency/Frequency (PUF) questionaire, which measures client's self-reported symptoms. The Potassium Sensitivity Test (PST) has been found to be a more sensitive and specific test than a cystoscopy, and is able to identify IC in the early phase of the disease. Some researchers believe it is the most effective test to date, as it demonstrates a positive result in 96% of patients. It is easily administered, minimally invasive, and allows for office-based diagnosis. "Only recently has the diagnosis for IC been simplified," so many physicians may not be aware of this change (see Urology, 69 {Supplement 4A}, April 2007).
How do I know if I have IC/PBS and when should I go to be evaluated?
Anyone who is experiencing the above mentioned symptoms after a negative urine culture, such as frequency (greater than 10 times a day), urgency (feeling an ongoing urge to urinate), nocturia (having to frequently urinate during the night), unexplained pelvic pain (recent studies have shown that chronic pelvic pain may have more of a bladder origin, than other gynecologic causes), as well as diagnosis and treatment of endometriosis without any symptom relief, and chronic urinary tract infections should consider being evaluated for IC. The PUF Questionnaire is now considered a valid screening tool, as well as one diagnostic tool in determining whether an individual may have IC. (PUF Questionnaire total score ranges are from 1-35. A total score of 1-14 = 74% likelihood of positive PST test (see above); 15-19 = 76% likelihood ; 20+ = 91% likelihood). This is an excellent, do-it-yourself, free way to evaluate your symptoms. Depending on your results, you can discuss further testing with a physician who specializes in diagnosing and treating IC.
There is still some debate regarding this issue. Fortunately the majority of IC cases are mild to moderate, where patients typically experience symptoms in cycles with flares and remissions. In the early phase of IC, patients usually have few and fairly mild symptoms and they often experience greater remission times. Approximately 60% of patients had a gradual onset of symptoms, beginning with urgency/frequency, progressing to nocturia (night urination), and then pain. Some experts believe that IC does progress over time and they emphasize the importance in a quick diagnosis to avoid increased symptom severity. By detecting IC early enough, treatment can be started and possible bladder damage can be avoided. Some believe that symptoms may progress over time for some people, however they appear to stabilize after several years. Many physicians, however, report that there is no evidence of progression in the patients that they treat once they seek treatment. Recognizing IC in the early phases is still a fairly new phenomenon and it is uncertain how or if IC does progress when being successfully treated and managed.
What causes IC/PBS?
Although it is not yet known what actually causes the onset of IC, there is some evidence of three different processes that are responsible for causing the symptoms of IC, and there may be more. Research shows that one of the primary causes of IC symptoms is a deficiency in the glycosaminoglycan (GAG) layer, found within the mucus lining of the bladder. This lining has an important function in protecting the bladder from the toxins and irritants found in our urine. It was found that when the lining begins to break down, potassium, which is found in high levels in urine, is absorbed into the bladder wall. Although not yet certain, it is thought that the absorption of potassium may be damaging to muscles, nerves and tissues. Another factor involved is an increased amount of mast cells found in the bladder. These are involved in allergic reactions, which leads to the release of histamine. A correlation was found between the density of mast cells and bladder inflammation. A third factor involves the inflammation of certain bladder nerves, as well as an increase in the amount of nerves found in the bladder. Typically nerve inflammation is a protective measure in response to tissue damage, however in the case of IC, the response may be maladaptive. Because there are several factors involved in producing IC symptoms, it may explain why individuals feel varying symptoms, why they are sensitive to varying triggers, and why they respond to various treatments.
Is there a cure for IC/PBS?
Although there is no known cure for IC yet, there are several treatments available which are found to be effective in relieving symptoms in most IC patients. Treatments include the use of both pharmaceutical medications and natural supplements. Elmiron is the only prescription medication approved by the FDA specifically for the treatment of IC. Other medications, although not approved specifically for the treatment of IC, have been useful for treating the condition in some patients. Examples of these are: tricyclic anti-depressants, anti-inflammatory agents, antispasmodics, antihistamines, muscle relaxants, and bladder analgesics. Natural supplements found to be very helpful for many patients include: glucosamine and MSM, Desert Harvest aloe vera capsules, CystoProtek®, quercetin, marshmallow root, herbal therapy, and many others. One of the more promising treatments are bladder instillations, such as Heparin, which studies show has a high rate of success in relieving symptoms; and Cystistat, which also shows a high rate of success (although not yet approved in the US). The use of pain medications, usually monitored by a pain clinic, is also a necessity for some patients. Many report significant relief from the use of these medications. More invasive treatments involve bladder distention, which does provide relief in some cases. For more severe, later stage IC, including those with Hunner's Ulcers, the use of an Interstim device (sacral nerve stimulation implant) may be helpful. This involves permanent implantation of electrodes and a unit emitting continuous electrical pulses, a surgical version of a TENS unit. In extreme cases bladder removal is also an option. Please see helpful links and articles for more information on many of these treatments.
Are there other treatments for IC/PBS?
Yes! Several studies, as well as hundreds of patient reports reveal that many individuals find symptom relief in a variety of other treatments. Some of these have included:
- acupuncture - a traditional Chinese medicine practice that involves stimulation of various points on the body often by the use of very thin needles. It is proposed that acupuncture produces its effects through regulating the nervous system, and through the release of endorphins. It may also alter brain chemistry by changing the release of neurotransmitters and neurohormones which affect the parts of the central nervous system related to sensation and involuntary body functions, such as immune reactions and blood pressure regulation;
- counseling and psychotherapy - there is new evidence that shows that how we think has a direct association to the level of pain we experience. Through pain management techniques, visualization, meditation, awareness of maladaptive thinking processes, and many other therapeutic techniques, IC patients learn to manage their IC symptoms and lessen their pain. They also gain many mental health benefits, such as decreased anxiety and depression, increased hope, and empowerment allowing them to take back control of their lives. Since the mind-body connection is so powerful, this often has an impact on physical symptom relief.
- massage therapy - gentle massage helps to relax the pelvic floor muscles as many IC patients experience pain which stems from these muscles , but also assists in providing overall relaxation benefits for the IC patient;
- physical therapy - the physical therapist works with the patient to help relax the pelvic floor muscles; relief may also be experienced through the use of a TENS unit and other equipment designed to manage IC pain;
- yoga - gentle stretching and exercise allow IC patients to gain many health-related benefits, and also contribute to lessening of pelvic floor muscle pain. Yoga also often involves the use of meditation which is also found to be beneficial for IC patients;
Does diet make a difference?
Until recently (Summer of 2007) researchers have not had any clinical studies that prove that diet plays a role in IC symptoms, however, most patients will attest to the fact that diet has a crucial part in managing symptoms. A new study now confirms that certain foods are problematic in many IC patients. Every IC patient is different in their response to foods, however there are certain foods that have been found to be bladder irritants for many. Eliminating acidic and spicy foods and avoiding caffeine, carbonated drinks, and alcohol has been found to decrease the severity of IC symptoms in many patients. Preservatives or other food additives are also suspected in producing IC symptoms in some individuals. Trying an elimination diet (initially only eating the "usually safe IC foods" and then slowly adding back other foods) is a way to discover your own bladder irritants. Please see the recommendations for the IC diet at: http://www.ic-network.com/handbook/diet.html. It has also been recommended that individuals be tested for unknown food allergies as these may also be contributors to IC symptoms.
What are some triggers of IC/PBS symptoms?
Both research and patient reports show that IC symptoms "flare" in the presence of certain events. These include, but aren't limited to: diet, stress, sexual intercourse, exercise, toxins in the environment, and estrogen surges prior to menstruation. There are varying systems involved depending on the type of trigger. Keeping a detailed symptom diary is extremely helpful in recognizing what causes flare-ups of IC symptoms.
Is there a connection between IC/PBS and other chronic conditions?
Many IC patients also report suffering from other chronic conditions. There seems to be an unexplained link between certain chronic conditions, such as: endometriosis, fibromyalgia, irritable bowel syndrome, vulvar vestibulitis, lupus, migraines, ovarian cysts, allergies, gastrointestinal problems, anxiety disorders, and more. In one particular study, due to their symptoms of chronic pelvic pain, a group of patients were initially diagnosed with endometriosis, later however, 89% tested positive for IC. More research is needed to determine the association, if any, between these conditions.
What type of doctor typically treats IC/PBS?Historically urologists have treated this condition as it is a disease of the bladder. Currently, many more OB/GYN physicians are also treating this condition as women (who are more frequently diagnosed) are being referred to these physicians for unidentified pelvic pain. A urogynecologist, a doctor who treats conditions that affect the female pelvic organs, also offers treatment for IC. It is recommended that you seek a physician from one of these disciplines, and preferably a physician who specializes in IC treatment. It is important that you partner with your physician in providing them with valid information and research that you feel may help your IC symptoms. It is also important to be your own advocate, helping your physician become an expert in your personal IC care!
Why isn't IC/PBS very well known and so difficult to diagnosis?
The typical IC patient is usually symptomatic for 4-7 years and sees an average a of 3-4 physicians before being diagnosed with IC. According to researchers, this evidence suggests: 1) that physicians are having difficulty recognizing the variety of symptoms present in a patient with IC, 2) the symptoms mimic other disease states and physicians want to be cautious in diagnosing accurately, and 3) there still appears to be a reluctance in giving such a diagnosis. Misdiagnosis is common. Until recently, IC had more restrictive diagnostic guidelines and physicians were much less likely to diagnosis IC, particularly in the early phases. It wasn't until the presentation of severe, late stage IC symptoms that physicians were certain of an IC diagnosis. Painful hemorrhages and ulcers were once considered the hallmark of IC. With these came chronic, debilitating lower urinary tract symptoms and pelvic pain which then confirmed an IC diagnosis. Today, because the symptoms, the pain cycles, the treatments, and the individual patient responses is so varied, it continues to be a difficult disease to diagnose and treat.
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References: The Interstitial Cystitis Association (ICA); Urology (Supplement 4A), April 2007; The Journal of Urology, January 2004; IC Network; Bay Area Pain & Wellness Center, , Progressive Healthcare for Women of Lawrenceville GA.
