Interstitial cystitis, or IC, is a chronic pelvic pain syndrome originating in the bladder. Patients with IC experience urinary pain, frequency, urgency, and nighttime urination that cannot be attributed to other causes.
Interstitial cystitis, or IC, is a chronic pelvic pain syndrome originating in the bladder. Other names for IC include painful bladder syndrome (PBS), bladder pain syndrome (BPS, used primarily in Europe), and hypersensitive bladder syndrome (HBS, used primarily in Asia). Men may also be diagnosed with chronic prostatitis (CP), which shares similar symptom characteristics with IC.
Patients with IC experience urinary pain, frequency, urgency, and nighttime urination that cannot be attributed to other causes. Although symptoms of interstitial cystitis can be confused with a urinary tract infection, urine from an IC patient does not show any bacteria when cultured. Sometimes I describe IC to people as the difference between a cold and allergies. A person may sneeze with both, but a cold is caused by a germ and allergies are not.
Patients with IC have a damaged bladder lining. Both the glycosaminoglycans (GAG) layer (the protective mucous coating on the surface of the bladder), and the urothelial layer (the skin-like barrier that transmits the messages of pain and urgency to the brain) can be damaged in a bladder causing IC symptoms. Glomerulations, or petechial hemorrhages, are often observed when a patient undergoes a cystoscopy under anesthesia, however, there is some concern that this damage could actually be caused by the procedure itself. Mastocytosis (almost like having hives in the bladder) is also a common finding. About seven to nine percent of patients actually have ulcerations in the bladder lining.
For diagnostic purposes, IC pain generally worsens as the bladder fills with urine and is relieved upon emptying the bladder. The pain may or may not be perceived as coming from the bladder. Many patients report that their pain is urethral, with varying degrees of pelvic pain. Other patients report back pain, shooting pain down the legs, and pain that is positional—for example, sitting in one place too long can trigger symptoms. In addition, both men and women report pain with intercourse. Men with IC often experience penile pain at the moment of ejaculation, whereas women might experience pelvic pain up to 24 hours after intercourse. Women’s symptoms may also increase premenstrually and at ovulation. IC pain can be visceral, which means that the pain signals travel to the same area of the brain where emotions are generated, so IC patients may appear to be highly emotional. In addition, IC pain can be neuropathic. Simply put, the person is in pain for so long that the nerves become damaged and begin to send more intense pain signals over time.
The other two cardinal symptoms are frequent urination and an unexpected urge to get to the bathroom immediately. Patients have reported having to use the bathroom up to 60 times a day. Sleep disruption from these symptoms is often a major cause of distress for patients.
Although it is valuable to know those clinical descriptions of the disease, no definition of IC is complete without the vivid descriptions IC patients use to explain how they feel. Often patients will describe the pain as if they have “razor blades or battery acid” in their bladders. Patients may be frustrated about the fact that they are fine one moment and doubled over in excruciating pain the next. Or, they will express defeat and resignation saying, “I may as well put a mattress in the bathroom; I go so often at night.”
IC patients often have other coexisting conditions including irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, vulvodynia, and various allergies, all suggesting a connection with the immune system may be involved in some way. Patients may also experience a variety of mood or mental health disorders related to their disease. People living with chronic pain often experience a tremendous amount of stress, suffering emotionally as well as physically. Their social lives may be disrupted because of their symptoms, and their intimate relations strained. The disability of many with IC is very real; nearly half of all IC patients in 1987 could not hold full-time jobs. Relationships can be strained, and many patients become depressed. Suicidal thoughts are not uncommon, and frequently enough, patients act on those thoughts.
The good news is that a well-designed and individualized treatment plan can moderate symptoms for most IC patients. Oral medications, intravesical instillations (medications put into the bladder via a catheter), physical therapy, and a variety of self-help methods are the most common treatments. One of the most conservative treatments, dietary modification, is helpful for over 90% of IC patients—a claim that no other treatment can make to date. In fact, many patients can regain an acceptable quality of life by simply eliminating the most abrasive foods—coffee, tea, chocolate, alcohol, citrus fruits and juices, chili spices, tomato products, and soy products. The most important thing to remember is that there is always hope for healing, and many patients find a way to coexist with their fragile bladders, living normal, active lives.
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