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Frequently asked questions about Interstitial Cystitis

October 1, 2006 - 5:51am — Jessica

What is Interstitial Cystitis?

Interstitial Cystitis (IC) is a painful chronic bladder condition. Its symptoms often mimic those of a Urinary Tract Infection (UTI) or prostatitis, though urine tests come back negative for bacteria that typically cause UTIs. IC primarily affects the bladder, although the entire urinary system is involved. Many with IC find themselves unable to hold large or "normal" amounts of urine and void much more frequently, with numbers that can exceed one hundred trips to the bathroom in order to void daily. Though bladder size is not always the determining factor in voiding frequency, many with IC have decreased or diminished bladder-holding capacity. Resulting from the fact that the bladder wall (the lining of the bladder) often becomes irritated, inflamed and stiff or scarred as a result of the effects of IC. Pinpoint bleeding, a result of recurrent or continual irritation called Glomerulation occur in approximately 90% of those with IC. The symptoms of IC differ and vary greatly from case to case, though there are several symptoms that are commonplace and key ways for doctors to officially diagnosis Interstitial Cystitis. These include, but are certainly not limited to intense pain, tenderness (soreness), pressure discomfort and or a burning sensation in the bladder and surrounding pelvic region. Urinary frequency and urgency are primary symptoms, as is a burning or "acidic" feeling while urinating.

Is Interstitial Cystitis fatal?

No, Interstitial Cystitis is not a fatal condition, fortunately. A fatal condition is one that may or most certainly leads to death as a result of its impact on your body, such as AIDS. IC is a chronic condition, this means that it exists in the body for a potentially indefinite amount of time, with symptoms decreasing, increasing or remaining the same, yet not vanishing entirely (either through medical testing or how the patient feels) from the body.

Is Interstitial Cystitis contagious?

No it is not, fortunately. There is absolutely no proof whatsoever that IC is contagious. Nor is it not a sexually transmitted disease either.

Who develops Interstitial Cystitis?

Anybody regardless of age, race, creed, sexuality, or prior health can develop Interstitial Cystitis. IC is predominantly found in women, with approximately 90% of IC patients being women. At one time it was thought that IC mainly affected women approaching or going through menopause, however now it is known that this is not the case as women of any age can develop IC. Recently more and more cases of IC are being diagnosed in women in their teens and twenties. Men can also develop IC, though they may be misdiagnosed as having prostate related conditions before receiving the correct diagnosis of IC. Though its occurrence is rare, children may develop IC as well.

Why have I never heard of Interstitial Cystitis before?

This is not a simple question to answer - the most likely reason is that IC is not a very common condition. Numbers vary in terms of what percentage of the population is affected by IC, though some figures point towards 0.5 percent of the population being affected (suffering from or having) Interstitial Cystitis. IC is a condition that affects the bladder and urinary system, such as voiding (urinating) frequently. Therefore many people may be less likely to discuss or generate awareness about their IC due to the private nature of this condition. Fortunately doctors and medical practitioners are becoming more and more familiar with IC and more knowledgeable in regards to diagnosis and treatment. IC lacks formal awareness; perhaps because it has only one officially FDA approved medication used in its treatment. Also it is not represented by any (famous) celebrities or spokesperson, which can contribute to a lack of public awareness. Organizations like the Interstitial Cystitis Association of America and the National Kidney Foundation (of America) as well as this website and others are working to spread the word about IC, and educate the public about this serious chronic condition.

What are the primary symptoms of Interstitial Cystitis?

The symptoms of IC are varied from patient to patient, however many are shared between almost all IC cases. Pain is an overriding factor in IC. For many, sensations of pain radiate from the bladder, for others the pelvic region (including but not exclusively, perineal and abdominal pain). For others still, the urethral area (internally or externally) is the source of pain, and for some all three of these areas experience pain or discomfort. This pain may be intermittent or continual (chronic). The level of pain can range from moderate to debilitating, though the degree of pain (discomfort) is not necessarily a means of determining the severity of IC. Pain can be described in many ways, though words such as burning, stabbing, dull, aching, and sharp are often used in regards to IC.

Urinary frequency (having to void, also know as urinating or peeing) is a hallmark IC symptom, as the bladder is internally wounded, and "normal" or healthy bladder function is not possible. For some the frequency reaches excessively high numbers, with voiding exceeding 60, 80 or even more trips a day to the washroom. Waking up to void at night, which is known as nocturia may also occur, and can greatly diminish a person's ability to get a proper night's sleep.

Urinary urgency may also occur. Urgency is the sudden feeling that one needs to void immediately. The inability to do so may lead to incontinence, which means that voiding occurs involuntarily. It is worth noting that incontinence is not a primary or common symptom of IC and may in fact be caused by other medical conditions such as Stress or Urge Incontinence. Urgency is often coupled together with frequency, resulting in the sensation that one is literally feeling the need to void continually, regardless of the actual amount of urine stored at that time in the bladder.

Another common symptom of IC is a burning, acidic, or painful (painful urination is called Dysuria,) feeling whilst voiding. Most often a result of the fact that the damaged (wounded) bladder has developed an increased sensitivity to the chemicals, ingredients and substances in the foods that we eat and drink, as well as the body's own naturally occurring acids. The inside of the bladder is hypersensitive. Some find that changes in their diet such as eliminating spicy foods, alcohol, caffeine and acidic foods, such as citrus fruit and tomatoes, can affect the severity of not only painful or burning urination but also for other IC symptoms, such as pain.

Other symptoms may not be as readily discussed in typical Interstitial Cystitis literature, but they can include bloating of the stomach for no apparent reason, and the sensation of pelvic cramping similar or identical to menstrual cramps. External sensitivity of the bladder region (lower abdominal and suprapubic area), is often accentuated by touch or pressure, such as the waistband on clothing.

Pain during or following sexual intercourse is also common in many patients with IC. The medical term for painful sexual intercourse is also known as Dyspareunia. Pain can vary in its degree and the onset (of pain) may not occur until after the act of sex has been completed. It is often described by those with IC as a throbbing, bruised or burning sensation in the vaginal canal and bladder.

Is there more then one type of Interstitial Cystitis?

Interstitial Cystitis is most commonly classified into two categories depending on whether or not there is a presence of ulcers, known as Hunner's ulcers or patches (named for Dr. Guy Hunner who first formally noted the ulcers in 1915) seen inside of the bladder (the bladder lining). Hunner's patches are found in approximately 10% of IC patients. The presence or lack thereof, of Hunner's patches does not greatly influence the treatment methods used in IC patients. Those without ulcers are referred to as being nonulcerative, while those who do have ulcers are said to have ulcerative IC..

How is Interstitial Cystitis Diagnosed?

The diagnostic procedure of IC is almost always one involving the exclusion of any other possible disease or similar medical condition. Other diseases that can produce similar symptoms of IC include Urinary Tract Infections, Urethritis, Trigonitis, Sexually Transmitted Diseases (STDs), Bladder Cancer, Endometriosis, Prostatitis (in men), and Overactive Bladder Syndrome & Urge Incontinence. Telltale signs used to aid in the diagnosis of IC are urinary urgency and frequency, bladder/pelvic pain and painful urination. Unlike many diseases, no conclusive proof of IC appears in blood work, prostate secretions, or urinalysis tests available to date. Unfortunately for many years the lack of evidence found in urine testing lead patients to go un-diagnosed or improperly treated with the wrong or inappropriate types of medications, such as excessive amounts of antibiotics. Thankfully most physicians today are familiar with IC and continue on with the diagnosis, using additional diagnostic procedures. The most accurate of which is a Urodynamic test. A Cystometry which measures the bladder's true capacity and ability to properly (completely) empty, is typically preformed. This should be carried out under anesthesia (as stretching the bladder is typically extremely painful and uncomfortable for IC patients). Cystometry involves filling the bladder with water, liquid or gas using a medical tool known as a Cystoscope, which is a hollow, drinking straw-like tube with numerous lenses, a camera, and a light to see inside of the urethra and bladder. As the liquid is instilled (put in the bladder) and expelled, the changes in pressure are recorded via an electric monitor. Cystometries are usually able to detect Hunner's ulcers (if present), Glomerulations (as known as Petechial Hemorrhages or pinpoint bleeding on the inside bladder walls), bladder wall inflammation and a stiffened or abnormally thickened bladder wall. A procedure known as Hydrodistention is often carried out at the same time; it too is performed with the use of a Cystoscope. This test involves filling the bladder with 60-80cc (cubic centimetres) of water for several minutes, then draining it. As it drains the doctor will look for blood in the effluent liquid. The bladder is then refilled and expanded, as a means to look for IC symptoms such as Glomerulations. Following Hydrodistention, some IC patients experience (either right away or after a period of time) a decrease in their symptoms, which may last for a 2-6 months. Others find it aggravates their bladders further, or has no effect at all either way. Urinalysis, cystometry, hydrodistention, biopsy of the bladder wall, urine cultures/tests and prostate secretions can all be used conjointly to help reach an Interstitial Cystitis diagnosis. Following such diagnostic test the doctor or medical team will schedule a follow up appointment (or series thereof) to discuss the test results and begin an IC treatment regiment or plan if further testing is necessary.

Is there a cure for IC?

At this time there is no cure (cure being defined as an absolute solution to the problem/cause of a disease) for IC. Discouraging as this is, especially for those who are recently diagnosed IC does have numerous treatment options available.

How long does IC last?

Though it is a chronic condition, due to the fact it has symptoms that carry on for a prolonged or indefinite amount of time, it is not per se terminal (meaning it has no end). Some patients can spontaneously go into Remission, meaning that their symptoms disappear or lessen greatly. For a few this is permanent, though for many IC returns at some point in their lives, and this cycle of remission and IC can continue for the duration of the patient's life. Sadly not all IC patients experience remission.

Are there treatments available?

Yes, there are a number of treatments available today to help combat the effects of Interstitial Cystitis. These include oral medications, Bladder Distention, medication put directly into the bladder through a method known as Bladder Instillation, InterStim implants, Transcutaneous Electrical Nerve Stimulation (TENS), use of dietary acid reducers (such as Prelief), physical therapy (physiotherapy), life style and diet changes, and alternative options such as reputable supplements targeted at IC symptoms.

Is there an Interstitial Cystitis pill?

There are numerous and varied medications prescribed to help IC symptoms, however to date there is only one that is formally designed to combat IC. This medication is Elmiron (Pentosan polysulfate sodium), and it is a FDA (since 1996) approved drug. The exact reason why Elmiron works on IC patients is still speculative, but many researchers and doctors feel that it might help to repair defects that have formed and developed in the bladder lining. Like with almost any medication/drug, Elmiron is not without its side effects, which include hair loss, head aches, liver and gastrointestinal problems. Formal studies of Elmiron have not been carried out on pregnant women, so it is advised to not take Elmiron during pregnancy, unless a physician tells you otherwise. Typically patients are prescribed 100mg (milligrams) of Elmiron to be taken three times a day. Elmiron does not usually take effect on a patient's bladder/body right away, so patients are advised to continue taking Elmiron for as long as one year, in order to see if it will make any improvement to their condition. Elmiron may help with any or all symptoms of IC. A reduction in urinary frequency is one of the most common and positive results of taking this drug. In addition to Elmiron numerous other classes of drugs are used as treatment options for IC, these include Antihistamines, Anti-inflammatories, Antidepressants, Antispasmodics, Anticonvulsants (drugs created to help control seizures, such as those experienced by patients with Epilepsy and pain relieving medications, both NSAIDS (non steroidal anti inflammatory drugs) such as Advil and Aspirin and Narcotics/Opioids.

What is bladder Instillation?

Bladder Instillation, also known as a bladder bath, involves filling the bladder for 10-20 minutes with a solution of pharmaceutical ingredients (or only one medication, depending on what the treating physician deems most appropriate). After the allotted time period the bladder is emptied. Though physicians largely carry out this procedure, some patients take it upon themselves to learn the proper instillation methods and administer the instillation at home, through self-catheterization. Thus far there is only one FDA approved drug specifically for bladder instillation; Diethyl Sulfoxide (DMSO, RIMSO-50), specifically for bladder instillation. Administering the instillation is done by putting a narrow Catheter into the bladder, via the urethra. DMSO is typically carried out 3-8 times in the span of three months, with improvements being noted in the initial month most often. DMSO works by reaching the tissue of the bladder wall and reducing both pain and inflammation. In addition it is thought to possibly help reduce the number of muscle contractions (Spasms) a patient has, therefore cutting down on urgency and frequency. Other medications can also be instilled into the bladder, with varying results. These include Heparin a drug that chemically mimics certain aspects of the Glycosaminoglycan (GAG) of the bladder. Heparin is somewhat like Elmiron, as it works to artificially coat (or perhaps more accurately recoat) the bladder. It's not uncommon for Heparin and DMSO to be instilled simultaneously into the bladder. Cystistat (Hyaluronic Acid), released in 1995, is an instillation treatment developed by a Canadian company. The human body naturally produces hyaluronic acid, which is found in connective tissues. It is thought that Cystistat works by coating the lining of the bladder and guarding it against substances in the urine that may be irritating to the IC bladder. Other more antiseptic oriented drugs are also used in bladder instillation, among them Silver Nitrate which initially strips the bladders lining (extremely painful for most people), in the belief that the body may naturally rebuild and heal the wounded bladder lining. This procedure is thought to be rather dangerous and outdated and is used far less frequently today. Clorpactin, works by killing certain bacteria, fungi and viruses and had been used for many years in various medical applications as an irrigant, though its effectiveness in treating IC is debatable, as conflicting studies have shown both positive and negative results of IC patients.

What is the cause of Interstitial Cystitis?

The origins of IC are thus far unknown, though several theories abound. Some researchers believe IC to actually be a syndrome, more then a disease; therefore they think it to have a variety of different origins. Theories on the cause of IC range from the obscure to the highly probable, including Bacteria and infection which is a logical thought as so many of the symptoms of IC are also seen in bladder infections known also as Cystitis or common cystitis are seen in IC patients. Another idea is that Mast Cell (cells which contain Histamine, Tryptase and other chemicals often associated with allergic responses) abnormalities in the bladder or perhaps the entire body of an IC patient. It is also thought that perhaps the GAG layer of IC patients may be defective as a result of a problem occurring in the Epithelial Permeability of the bladder. Therefore if the GAG layer is damaged the bladder has a heightened susceptibility to irritants in the urine, as they permeate into the more sensitive layers of the bladder. There is probability to this theory as many patients respond well to treatments that artificially coat or help to rebuild the damaged bladder lining, such as Cystistat and Elmiron. Other ideas include autoimmune disruptions or weaknesses, similar though not fatal, to those of other more damaging immune diseases. Another possibility is that IC is a result of trouble/defects/damage in/to the body's neurotransmitters (and therefore has its basis as a neurological condition), especially those involved in the urinary system.

Is Interstitial Cystitis progressive?

There is no straightforward answer to this question, as for some, IC is progressive while for others with IC, it (their symptoms) stay the same as it was when they first developed the condition. For others still IC begins progressively then plateaus, remaining at a certain level indefinitely, with the exception of bladder flare-ups, known as Flares. IC often occurs very rapidly, with little or no prior warnings or signs; another reason why it may be accidentally confused with or wrongly diagnosed as a bladder infection (UTI). For some IC is tolerable or hardly noticeable, especially if appropriate and helpful treatments are found, or the condition is caught early on in its history. Yet, sadly for others with IC, it is literally debilitating, leaving patients bedridden. In extreme cases surgery may be considered as a "last option" for attempting to treat or halt the progression of IC.