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Understanding The Pain of IC: Physical & Emotional

Who doesn't remember their first bout of IC? The on-going relentless pain (pressure and/or frequency) was different than any other. It was frightening. There seemed to be nothing to relieve it and finding the right doctor to help was just as frustrating. Finding the right treatment or medication added to the frustration. But in time, with the appropriate treatment and proper diet, the painful symptoms seemed to calm down. When the pain level decreased, there was relief, even though there seemed to be an on-going awareness of the bladder. The relief was relative to the intense symptoms first experienced.

Certainly, many of us get used to living with a level of pain. Some patients describe an ongoing pressure, which they don't consider pain. However, this pressure is actually considered pain. Although it may not compare with the more severe symptoms of IC, there is a sense that it is not normal to experience this pressure or bladder awareness. Again, compared to a flare-up, it is bearable and we learn to live with it. But, had we never experienced this pressure before, it would certainly get all of our attention.

What causes the pain, pressure and frequency of IC?

Mast Cells
IC patients have increased levels of mast cells in their bladder walls. Mast cells play a roll in allergic reactions by secreting histamine and other substances that cause inflammation. When mast cells release histamine abnormally, which they do in IC patients, they trigger IC symptoms.

Mast Cells and Nerve Related Inflammation
Nerve related inflammation results from mast cell degranulation (when mast cells release inflammatory histamine and other substances). Sensory nerve fibers are located close to masts cells. When mast cells degranulate they cause over stimulation of the sensory nerves. This over stimulation causes a release of pain producing substances, such as substance P. Substance P furthers the nerve inflammation by activating mast cells, and the pain cycle goes on. There may be patients who may experience nerve related inflammation from other processes.

Substance P
Substance P aids the transmission of pain signals throughout the body and is responsible for the amount of pain one feels. Substance P is released from nerve endings when one experiences a painful stimulus. High levels of substance P are found in patients with chronic pain conditions, such as IC and fibromyalgia (FMS), and may cause low pain thresholds to pain. This is not to say that patients with these and/or other conditions aren't able to handle pain. Chronic pain patients usually learn to handle pain incredibly well. (Substance P also appears to trigger further mast cell activity.)

Hormones and Mast Cells
The bladder has a surprisingly high number of estrogen receptors which make the bladder sensitive to variations in estrogen levels found during the menstrual cycle. Why? The bladder, urethra, vagina and vulva are all part of the urogenital sinus, and began as one small cell in a fetus which later divided to create each organ. Thus it is not suprisingly that the bladder can be so sensitive to estrogen. High estrogen levels activate mast cells and can cause IC patients to experience an increase in pain, pressure and frequency. Many IC patients endure an increase in bladder symptoms during the times of the month when their estrogen levels are high, particularly in the days before their period. However, normal estrogen levels have beneficial effects too. Estrogen helps strengthen the bladder lining, thus helping to protect the bladder wall and nerves from bacteria, and other irritating substances in some patients.

Bladder Infections
Patients who suffer with chronic bladder infections (urine cultures that test positive) also suffer from the impact that bacteria has on the sensitive bladder tissues and nerves. Bacteria can "burrow" into the bladder wall thus creating small tunnels or wounds. Just as with the wounds of IC, these "tunnels" lead to the sensitive nerves and muscle. When urine enters, irritation commonly occurs. On an IC bladder, an infection can be excruciating. Even after the infection is gone, it may take several weeks for the inflammation in the bladder to settle down. IC symptoms worsen when infectious agents come into contact with the bladder wall.

Foods, Drugs, Chemicals, and the Environment
Because the lining of the bladder in IC patients is damaged (patchy and leaky from cellular destruction), bladder tissue and nerves are exposed to many drugs and chemicals, toxins and bacteria, acids and amino acids in foods. These irritants invade the bladder tissues and create an inflammatory reaction. One common source of irritation and pain is acid (such as in cranberry juice, sodas, coffees, etc). Nearly every IC patient learrns very quickly that they must modify their diet to avoid irritating the bladder further, including reducing acidic foods, alcohol and salts. Click here for more information on the IC diet.

Pelvic Inflammation causes Spasms
Inflammation in the bladder causes changes in sensory function. Even small amounts of urine can irritate IC patients' bladder walls and nerves, and cause pain, pressure, urgency and frequency. More advanced IC patients may develop bladder walls that are scarred and stiff, which greatly reduces their bladder capacity.

In general, the bladder performs (contracts) best when it is just full enough to signal the need to void. When it's too full, the bladder may become distended (as it can during the night, making the first morning void difficult to start). The opposite is also a problem, because the bladder doesn't contract well when there's only a small amount of urine.

The pelvic floor muscles are the only muscle group in the body involved in a major bodily function - urination. If the muscles are weak, the patient will likely be incontinent. If the muscles are tight, the patients may find it difficult to urinate or to start their stream. Why? Urination occurs through the relaxation of muscles. In IC patients, the pelvic floor muscles are often very tight thus making it hard to urinate, to keep a stream going, and to empty the bladder completely. Straining to urinate should always be avoided. Straining can cause irritation, burning, bladder and even more pelvic floor spasms that lead to urgency and frequency. Some experts believe that pelvic floor dysfunction (PFD) causes IC, and other experts believe that IC causes PFD. (See our columns on Pelvic Floor Dysfunction.)

IC Causes A Specific Type of Pain

Visceral Pain
Medtronic describes pain as a process, which occurs when pain receptors in the skin and other tissue send an impulse through the spinal cord to the brain. The brain then registers the sensation of pain, not the point of injury.

Visceral pain is the type of pain produced by the organs in the body. IC pain is visceral pain. Experts suggest that IC may be a chronic visceral pain syndrome. There is much arousal and emotion associated with visceral pain, because it sends messages to the part of the brain called the limbic system. The limbic system regulates arousal and emotion, pleasure and pain, smell and sexual desire.

Visceral pain is different than somatic pain, which is experienced after fracturing a bone or a surgical incision. It's not really possible to keep a "stiff upper lip" or use "mind over matter" with intense visceral pain. The messages from the bladder can make a patient feel out of control, upset, emotional, depressed and hyper-vigilant (the need to be on guard against harm). Treatments for IC are often geared to calm the pain and the symptoms by preventing pain signals from reaching the brain.

IC is a Chronic Pain Condition
Chronic pain disables more people than cancer or heart disease. Chronic pain can result from a previous injury that has long since healed, or it can have an ongoing cause. The American Chronic Pain Association defines chronic pain as pain that continues a month or more beyond the usual recovery time for an illness or injury, or pain that goes on over months or years as a result of a chronic condition. Chronic pain conditions are not relieved by standard medical management.

According to the research of Allan Basbaum at the oUniversity of California, San Francisco, "With prolonged injury (such as IC) progressively deeper levels of pain cells in the spinal cord are activated. Pain nerves recruit others in a chronic-pain wind-up and the whole central nervous system revs up and undergoes what Clifford Woolf, M.D., Ph.D., pain researcher and director of Massachusetts General's neuroplasticity lab, calls central sensitization."

Depression and anxiety are physiological consequences of chronic pain. There are similar disturbances in the brain's chemistry with both chronic pain and depression. Quality of life can diminish due to pain and lifestyle changes.

Coping with IC
IC requires strict coping skills. To cope with IC, a patient must first accept that she, or he has a chronic condition that must be dealt with (this is not to say that one has to except intense pain). However, there are many factors that play into a patient's acceptance of IC. These factors include background, cultural values and beliefs, the role one plays in her, or his family, career demands, self-expectations, age, how one has dealt with illness in the past, reactions of family, friends, employers, co-workers, and of course, doctors.

It can be ver helpful to participate in an IC support group. When you meet other patients, you can offer learn excellent coping strategies from them... especially if you are newly diagnosed. You can find other coping and flare management strategies in the ICN Patient Handbook!

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