Contents: About IC Subtypes of IC Causes of IC Living with IC Diet Exercise Stress Smoking Cessation Sexuality Clothing Travel Restroom Access

About IC

Interstitial cystitis (IC) is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go). It can also be referred to as:

• painful bladder syndrome (PBS)
• bladder pain syndrome (BPS)
• hypersensitive bladder syndrome (HBS)

IC can affect anyone. Women, men, and children of any age or race can develop IC, but it is most commonly found in women. Three to 8 million women in the United States may have IC. That is about 3 to 6% of all women in the US. Approximately 1.5 million men have IC as well, however, this number is likely lower than the true rate because IC in men may often be mistaken for another disorder, such as chronic prostatitis/chronic pelvic pain syndrome.

 

Subtypes of IC

Most IC experts agree that IC is actually several diseases rather than only one disease, and can present as different subtypes. Currently there are 2 recognized subtypes of IC: non-ulcerative and ulcerative.

 Non-ulcerative IC: 90% of IC patients have the non-ulcerative form of IC. Non-ulcerative IC presents with pinpoint hemorrhages, also known as glomerulations, in the bladder wall. However, these are not specific for IC and any inflammation of the bladder can give that appearance. There is also no relationship between the number of glomerulations you have and how bad your symptoms are.
 Ulcerative IC: 5-10% of IC patients have the ulcerative form of IC. These patients usually have Hunner's ulcers or patches, which are red, bleeding areas on the bladder wall. Patients with Hunner's ulcers may benefit from treatment with laser surgery.
Researchers continue to study IC and investigate its different subtypes.

Causes of IC

The exact cause of IC remains a mystery, but researchers have identified a number of different factors that may contribute to the development of the disease. Many researchers believe a trigger (caused by one more events) may initially damage the bladder or bladder lining, and ultimately lead to the development of IC. Some of these triggers are:
 Bladder trauma (such as from pelvic surgery)
 Bladder overdistention (anecdotal cases suggest onset after long periods without access to bathroom facilities)
 Pelvic floor muscle dysfunction
 Autoimmune disorder
 Bacterial infection (cystitis)
 Primary neurogenic inflammation (hypersensitivity or inflammation of pelvic nerves)
 Spinal cord trauma

It is thought that this damage to the bladder wall then allows particles in the urine, such as potassium, to leak into the bladder lining. Once these particles get into the bladder lining, they can lead to a variety of body responses that may further damage the bladder and cause chronic nerve pain.

Researchers speculate that one reason for this continued damage to the bladder is that normal repair of the lining of the bladder does not occur in patients who develop IC. Research indicates that this might be due to a protein called antiproliferative factor (APF). Studies have shown that APF is produced by the cells of patients with IC, but not by the cells of healthy people. APF prevents the growth of bladder cells and the bladder may be unable to repair itself when APF is present.

In recent years the relationship between IC and abuse (sexual, physical, and childhood sexual) has become a hotly debated topic. The results of IC and abuse studies have varied greatly, indicating no connection, a slight connection, and a fairly high rate of incidence among those with IC. Many studies have also indicated that the rate of abuse for people with IC is the same as the rate in the general population. Finding a definitive answer to the abuse question may lie in using longitudinal studies which would follow a large group IC patients and controls over several years. However, several researchers and clinicians believe that since there has been only modest data supporting the abuse theory, clinicians and researchers may be losing sight of their main goal -- providing real help to those with IC -- by focusing on this issue.

This information is courtesy of the Interstitial Cystitis Association.

Living with IC

For many people, living with IC is a challenge that requires creativity, patience and determination. Because there is no cure for IC or one effective treatment that works for everyone, people with IC discover that they must take an active role in managing their lives.
 Diet
 Exercise
 Stress
 Smoking Cessation
 Sexuality
 Clothing
 Travel
 Restroom Access

Diet
Many IC patients find that diet plays an important role in helping them control the condition and avoid flare-ups. Others note that what they eat or drink seems to have no effect on how they feel. If you have not tried modifying your diet, it is worth experimenting with different foods and beverages to see if this works for you. Learn more about the IC diet.

Exercise
When you are in discomfort or pain, or tired from nights of disrupted sleep, you may find it difficult to exercise.IC patients with severe symptoms know that even the gentlest movement can make them uncomfortable. Yet many people with IC, even those seriously affected, do make the effort to engage in some form of exercise and report feeling better physically and psychologically as a result. Try these gentle exercises:
 Low impact aerobics
 Tai Chi
 Pilates for IC
 Walking
 Yoga

Stress
Most people with IC recognize that stress plays a part in exacerbating symptoms or bringing on flare-ups. Simply dealing with having IC and the accompanying symptoms can be a source of stress in itself. In addition to using regular exercise to combat stress and relieve pain, IC patients suggest:
 Learning basic relaxation techniques.
 Using meditation tapes and/or visualization.
 Learning self-hypnosis.
 Receiving massages.
 Going to psychotherapy to learn coping skills and stress reduction techniques.

Smoking Cessation
Cigarettes irritate the bladder and may worsen IC symptoms of frequency and urgency. Constant coughing, often a result of long-term smoking, puts pressure on the abdominal area and may heighten pain associated with the pelvic floor muscles. Bottom line, quitting smoking may help reduce the severity of your IC symptoms. A study done in China about the prevalence of IC in women (Neurourol Urodyn. 2008 Jul 31) found that smoking was correlated with IC symptoms. There are lots of online resources about quitting smoking. Check out the American Cancer Society and the National Cancer Institute for more information.

Sexuality
For some IC patients, the difficulty they experience engaging in and enjoying sexual activity is one of IC's more debilitating aspects. However, IC does not have to bring an end to your sex life. By taking a creative approach and remaining open to alternatives, many IC patients have found ways to be intimate and loving:

 Think of sex as a range of activities that can include oral-genital sex, massage, mutual masturbation, sharing fantasies, and simply holding and being held.
 Use antispasmodic or pain-reducing medications before sex and lubricants during intercourse to reduce discomfort. Avoid use of a diaphragm because it puts pressure on the bladder. To reduce pain the next day, take a 20-minute sitz bath and place an ice pack on the perineum for 20 minutes after sexual activity.
 Try working with a trained sexual therapist, especially someone with experience with the chronically ill.
Learn more about IC and intimacy.
Clothing
Wearing clothes that are comfortable and non-restrictive can help provide basic relief for IC patients. Create a wardrobe that is both fashionable and serviceable, by:
 Wearing loose clothing such as full skirts and loose pants.
 Avoiding belts and clothing that put pressure on the waist and abdomen.
 Trying thigh-high stockings, cotton leggings, or cotton tights.
 Selecting cotton underwear.
 Wearing low-heeled shoes or slippers to relieve lower back pain. Consider a soft rubbery sole to minimize impact. Use foam inserts in shoes for additional cushioning.

Travel
Travel presents many challenges for people with IC, especially those who are severely affected. However, even these patients, with a little determination, can travel and make the adjustments necessary. Prepare for travel carefully. Try these suggestions to make things a little easier:

 For car travel, carry a portable potty or bedpan in the car. Some IC patients have even installed portable toilets in vans. Portable female urinals are also useful.
 For air travel, arrange ahead of time for an aisle seat near the toilets. Sit on pillows to minimize vibrations. Restrict fluids before and during flight.
 Women can wear absorbent pads and men can use a condom catheter while flying or traveling by other modes where access to a restroom is sometimes restricted.
 Try not to travel during peak seasons when things are more hectic and unpredictable.
 Find out in advance the location of restrooms along your route. Some cities have guidebooks that list them. Check your bookstore.

Restroom Access
One of the greatest problems for people with IC in the US is the lack of public toilets. In order to gain access to restrooms in restaurants and other public places, you may need to be assertive. These steps may help:
 Carry the ICA’s Restroom Access Card, which is available for through the ICA Resource Materials Guide.
 Wear a Medic Alert bracelet that you can show if you are denied access.
 Check out restrooms on the go.
 Apply for a handicapped parking sticker if you are severely affected.

No one strategy for coping with daily life is a cure-all. Techniques for controlling symptoms, such as modifying diet, may be effective at some times and not at others. Even in the most difficult periods, try to remain flexible, be creative, and test a variety of approaches to managing IC. The first step in gaining control over IC is learning how to help and care for yourself.

This information is courtesy of the Interstitial Cystitis Association.