Interstitial Cystitis, also referred to as IC, is a condition resulting in discomfort and/or pain in the bladder and pelvic area. The symptoms often vary from one person to the next and will even vary in various occurrences in the same individual.
Individuals experience a range of symptoms from mild discomfort to intense pain in the bladder and/or pelvic area. In addition, they may also experience symptoms such as an urgent and/or frequent need to urinate.
The pain may change in intensity as the bladder empties or as it fills up. Often, when a woman is menstruating, her symptoms become much worse and they may also experience pain during intercourse.
Since the signs and symptoms tend to vary so much in severity, many researchers are in agreement that this is not one single condition, but a combination of several different ones.
In recent years, scientists have begun to use terms such as BPS- or bladder pain syndrome- and PBS- or painful bladder syndrome- to describe the conditions of painful urination that don’t specifically meet the criteria of interstitial cystitis.
The overall term, IC/PBS includes all cases of painful urinary symptoms that are not due to other causes such as kidney stones or infection.When an individual has interstitial cystitis, the wall of their bladder may become irritated, which can lead to scarring or stiffening.
Ten percent of individuals with this condition will experience Hunner’s ulcers, or patches of broken skin found on the wall of the bladder. In addition, individuals with this condition often have glomerulations, or pinpoint bleeding, on their bladder wall.
In some cases, individuals with this condition notice that their bladder is not holding very much urine, which means that they are going to the bathroom much more often. On the other hand, frequency is not necessarily related to bladder size.
Many times, when measured under urologic testing, many individuals who frequently need to urinate do have normal bladder capacity. Individuals with this condition could be urinating as many as sixty times each day- including going frequently at night.
This condition is much more common in women than in men. In fact, it has been estimated that around 3.3 million women age 18 and up experience pelvic pain and other symptoms such as frequency or urgency associated with this condition. On the other hand, it is estimated that around 1.6 million men 30 to 79 years old experience symptoms associated with this condition.
Causes of Interstitial Cystitis
Some of the symptoms that characterize this condition indicate that there could be a bacterial infection. However, when urine of individuals with this condition is tested, there are no organisms found.
In addition, individuals with this condition do not respond to antibiotic treatment. Researchers are studying this condition to understand the causes and to find treatments that will be effective.
Many times, women with this condition also have other conditions such as IBS and/or fibromyalgia. Scientists do believe that this condition could be a bladder manifestation of a general condition causing inflammation in various areas of the body.
Researchers have begun to explore the possibility that heredity could be a cause or partial cause in some forms of this condition. While it does not commonly run in families, there have been some cases where a mother and daughter or two sisters have been affected by it.
Diagnosing Interstitial Cystitis
Since the symptoms of this condition are often very similar to other bladder disorders and there is no real testing available to identify this condition, physicians must take the time to rule out any other conditions before considering this as a diagnosis.
The most common conditions that must be ruled out are UTIs and bladder cancer for both sexes. In women, a common cause of similar symptoms is endometriosis. In men, common causes for similar symptoms include chronic pelvic pain syndrome or chronic prostatitis.
In the general population, the diagnosis of this condition is based upon the following:
- Presence of bladder pain accompanied by urgency and frequency of urination
- Absence of other conditions that could be causing these symptoms
Diagnostic testing that is used to rule out other conditions include the following:
- Urine culture
- Bladder wall/urethra biopsy
- Distention of bladder (done under anesthesia)
Urinalysis and Urine Culture
Examining a urine specimen under a microscope and culturing the urine will be able to pinpoint any organisms known to infect urinary tracts and result in very similar symptoms to interstitial cystitis. Urine samples can be obtained through two methods: clean catch or catheterization.
For clean catch, an individual will wash their genital area before collecting urine in a sterile container. Red and white blood cell counts as well as bacteria in the urine can be indicative of the presence of an infection- which can then be treated with an antibiotic. If the urine is sterile while the symptoms persist, the physician may consider diagnosing IC.
Prostate Secretion Culture
While this test is not done very commonly, a physician may use this test, especially in men that do not have a history of culture-documented UTIs. In this test, the physician will obtain prostatic fluid so that it can be examined for signs of infection- which will be treated with antibiotics.
Distention of Bladder
In order to rule out bladder cancer as a cause for your symptoms, your physician may do a cytoscopic examination of your bladder. For this procedure, you will be placed under anesthesia and the physician will use a cystoscope to see inside of your bladder and urethra. He/she may also use liquid or gas to stretch your bladder to full capacity.
Biopsy of Bladder Wall/Urethra
A biopsy is a procedure where the physician will obtain a sample of tissue that can be placed under a microscope and examined. This will help to rule out the possibility of bladder cancer being the cause of your symptoms.
Treatments for Interstitial Cystitis
While scientists have not yet been able to pinpoint a cure for this condition and they are not able to predict which treatments will work best for each individual. A simple change in diet or treatments may cause the symptoms to disappear, or they could disappear on their own without any explanation.
On the other hand, even if the symptoms do clear up, they may return again after a few days, weeks, months, or even years. Scientists do not fully understand this condition and how to treat it.
Since the exact causes of this condition are not known, most of the treatments focus on relieving the symptoms. Many times, individuals are helped by one or more of these treatments. As research continues and more is learned about this condition, the list of options for treatment will likely change, so make sure that you discuss these with your physician.
Many people with this condition notice an improvement of their symptoms after the diagnostic bladder distention has been done. In many cases, the procedure will be used both as a diagnostic tool and a treatment tool.
Researchers don’t really understand why this works, but many believe that it increases the capacity of the bladder and interferes with the pain signals transmitted by nerves located in the bladder. While the symptoms will possibly get worse 4 to 48 hours following the procedure, they should improve within 2 to 4 weeks after.
This treatment is also known as a bladder wash or bath. In this procedure, the bladder will be filled with a solution that will be held for 10 to 15 minutes before being emptied. These treatments are given every week or two for approximately six to eight weeks and will be repeated as needed.
Most of the time, individuals who do respond to this treatment notice an improvement 3 to 4 weeks after the first cycle of treatments. If you are willing to catheterize yourself, this can be done at home, which is less expensive than having to go to your physician’s office.
The very first oral medication for this condition, Elmiron, was approved by the FDA in 1996. Clinical trials revealed an improvement in 30 percent of patients that were treated. Physicians do not fully understand how this medication works, but one of the theories is that it repairs defects that may have developed in the bladder lining.
The recommended dosage of this medication is 100 milligrams three times each day. You may not notice any relief from the pain of this condition for the first four months. It may take up to six months to notice any improvement in frequency of urination.
Your physician will ask that you give the medication at least six months to result in an improvement. If there are no benefits after 6 months, it’s reasonable to discontinue use of this medication.
Ibuprofen and aspirin are often the very first line defense for mild discomfort and physicians may recommend other medications to relieve pain.
In some cases, individuals who have this condition experience an improvement by taking antihistamines or tricyclic antidepressants. However, some people may not be able to use these medications because they cause them to be too sleepy during the day. Individuals who have severe pain may require narcotic pain relievers.
You must keep in mind that all medications- including OTC- come with some side effects, so you should always speak with your physician before taking long-term medications.
Electrical Nerve Stimulation
In this treatment, mild electrical impulse are used to stimulate bladder nerves either with an implanted device or through the skin. The method of delivering electrical impulses through the skin is known as TENS.
With this treatment, mild electrical impulses are sent into the body for minutes to hours two or more times throughout the day through wires placed just above the pubic area or on the lower back.
In some cases, the devices may be inserted into the rectum in men and the vagina in women. Scientists do not fully understand exactly how this therapy relieves pelvic pain, but it is thought that perhaps the electrical pulses increase blood flow, strengthen the muscles in the pelvis, and trigger release of chemicals in the body that block pain.
This particular therapy is fairly inexpensive and allows those individuals with this condition to be actively participating in their treatment.
While there are some specifications, the individual decides the intensity, duration, and frequency with which they use their TENS. Smokers do not respond as well as nonsmokers to this therapy and if improvement will be seen, it will happen in three to four months.
If preferred, the individual can choose to have the device implanted that delivers impulses on a regular basis to the bladder. A wire will be placed next to the tailbone and then attached to a stimulator located under the skin. This therapy has been approved by the FDA for individuals that do not respond to other forms of treatment.
While there is no official scientific evidence that links IC to diet, many individuals do notice that certain foods and beverages do contribute and/or cause bladder inflammation and irritation. Sometimes, individuals with this condition find that after drinking beverages or eating foods containing artificial sweeteners, their symptoms are triggered.
It is vital that you maintain a varied and well-balanced diet, but you may find that eliminating what may be trigger foods and then slowly introducing them will help you determine if that will help at all.
Some individuals with this condition do acknowledge that smoking seems to cause symptoms to be worse, but the link is unclear. One thing that is clear is that one of the major causes of bladder cancer is smoking. One of the best things you can do both for your bladder and for your health overall is to quit smoking.
Individuals with this condition find that taking the time to do gentle stretching exercises can help to relieve the symptoms they experience.
There is some new evidence that reveals certain types of physical therapy can help to relieve the symptoms of IC. Individuals should discuss this with their physician first.
This treatment option should be your last- when all of the other available options have not worked and the pain is unbearable. There are many different surgical options available and each of them have advantages and disadvantages.
Before you take this step, your physician will most likely refer you to a surgeon for a second opinion. Many times, a surgeon is reluctant to perform this surgery because many individuals still experience the symptoms of this condition even after surgery.
As mentioned, there are several different surgical options available for treating this condition. These include the following:
Fulguration and Resection of Ulcers: this is done by inserting instruments through the urethra. Fulguration is burning the ulcers with a laser or electricity.
Once the area has healed, the dead tissue, including the ulcer, will fall off- which leaves behind new, healthy tissue. Resectioning is removing the ulcers by cutting around them. Both of these treatments will be done under anesthesia.
Augmentation is a treatment that makes the bladder larger. The ulcerated, inflamed, and scarred tissue is removed, leaving the healthy tissue and the base of the bladder. Then, a section of the individual’s colon is then removed, reshaped, and attached to what is left of the bladder.
After surgery and healing, the individual should be able to urinate less frequently. The effect on the pain level varies and in some cases, the condition will appear on the section of the colon that was attached to the bladder.
Bladder removal, referred to as cystectomy, is another option- but is used rarely. Once the bladder has been taken out, there are several different methods that can be used to reroute the urine from the body.
Even after the bladder has been removed, some individuals will still experience phantom pain related to this condition. Therefore, the choice to undergo bladder removal should only be made after all other treatment methods have been proven to not work.
Of course, removal of the bladder is not always suggested in those that have severe IC. In some cases, a urologist will recommend that the urine be rerouted to a piece of bowel attached to the abdominal wall.
Urine will be collected into a bag that will be emptied on a regular basis. This procedure is not guaranteed to improve the level of pelvic pain experienced, but it can help to decrease the frequency of urination and help to improve the quality of life in those who have frequent urges.
Special Concerns Regarding Interstitial Cystitis
Many people ask about special concerns regarding this condition. Following are some of the most common ones:
1) Cancer: there is no evidence that this condition will increase your risk of developing bladder cancer.
2) Pregnancy: while researchers don’t have much information regarding pregnancy and interstitial cystitis, it is not believed that this condition will affect a woman’s fertility or the health of a fetus. Some women do notice that their condition actually goes into remission while they are pregnant. On the other hand, many other women find that their condition becomes worse while they are pregnant.
Coping with Interstitial Cystitis
It is critical that individuals with this condition receive the emotional support of family, friends, and others with this condition. Studies have revealed that individuals who take the time to learn more about their condition and become actively involved in selecting treatment for it will cope with it much better than those that do nothing.