Everything You Need To Know About Interstitial Cystitis

A Q+A with Jill Osborne, Founder & CEO of the Interstitial Cystitis Network

Woman sitting on toilet bowl with hand on chin
Getty Images/Hitoshi Nishimura

The following is from an interview with Jill Osborne, Founder & CEO of the Interstitial Cystitis Network:

Q: Please tell me about your background and interest in Interstitial Cystitis (IC).

A: I am very typical of IC patients. I was 32 when my symptoms started. Several times a month, I experienced intense bladder pain, discomfort, and the need to urinate frequently, particularly at night. Yet though it certainly felt like an infection, bacteria was never found in my urine.

It took over a year to diagnose my IC. By the summer of 1993, I was barely able to walk around the block without crying. Driving was very difficult, work was nearly impossible, and I (as some IC patients do) experienced intractable pain. Though I had an excellent urologist, I felt isolated and alone. Then, one day, I spoke with another IC patient by phone. For the first time, I felt that someone truly understood my condition. I learned several self-help strategies and conventional treatments that did eventually give me substantial relief. Most of all, I was given the gift of hope.

I started my first IC support group just three months after my diagnosis and chaired my first IC medical conference one year later. In 1994, we recognized a need to bring support directly into the homes and offices of those who could not attend local meetings, hence our establishment of the first bladder disease and IC support groups on AOL.

In 1995, we ventured onto the world wide web by creating the Interstitial Cystitis Network website with the goal of offering support and information to patients, an extensive online research library, and clinical resources for physicians (all at no cost to our participants). In Spring 1998, the ICN was established as the first patient-run publishing company dedicated to IC.

We now serve nearly 10,000 patients in 16 countries.

Q: What causes IC?

A: Despite decades of documentation of a bladder syndrome (now called IC) , as well as the discovery that it affected both men and children, IC was regrettably labeled a hysterical disease of women in the 1950's when researchers suggested that a woman who had been under medical care with severe IC may have had "repressed hostility towards parental figures handled masochistically via bladder symptoms since infancy." Even today, some patients encounter physicians who believe that there is no treatment for IC other than referral for a psychological evaluation.

It was not until 1987 that the US National Institutes of Health convened their first formal meeting on IC, establishing a definition for the disease and launching a course for future research. Researchers now believe that IC may have several origins, including possibly fastidious (able to cling to tissues and not found in normal urine) infection, a breakdown of the GAG layer in the bladder wall, possible mast cell involvement and neurogenic inflammation.

There is no consensus at this time on the cause of IC and many do believe that it is a syndrome, perhaps with a variety of origins.

Q: What are the symptoms of Interstitial Cystitis?

A: IC patients can experience any combination of urinary frequency (more than eight times a day), urinary urgency, and/or bladder pain. For diagnostic purposes, a physician may also perform a hydrodistention to look for small pinpoint hemorrhages found in the bladders of IC patients, called glomerulations.

IC patients may also experience the need to urinate frequently at night (nocturia), discomfort with sex, and difficulty sitting or driving a car. IC patients may also have a reduced bladder capacity and/or sensitivity to foods (such as cranberry juice, acids, alcohol, chocolate, citrus, and more). You can often recognize an IC patient by their frequent need to use the restroom, particularly while driving longer distances.

Q: How is IC different from other bladder disorders?

A: Ahhh... this is the $10,000 question. You have to remember that the bladder can only speak one language, that of pain, frequency, or urgency. So despite the condition or trauma, bladder patients may experience very similar symptoms.

Prostatitis patients, for example, usually experience perineal pain, frequency, reduced urine flow, and possibly impotence and pain before, during, or after ejaculation.

Urethritis patients can experience frequency, urgency, or pain even though it appears to be an inflammation of just the urethra. Urethritis can be triggered by either infection or sensitivities to soaps, spermicides, bath products, or douches. Patients often complain of direct urethral pain, sometimes during urination.

Urethral syndrome is another nebulous bladder term. Doctors have disagreed about the definition of urethral syndrome. Basically, it appears to be used in patients who may have frequency or urgency, but with no infection found.

Trigonitis is another disease that has virtually identical symptoms to IC (frequency, urgency, an/or pain). Trigonitis is used when doctors observe that the trigone in the bladder has a cobblestone-like appearance. Some doctors dispute trigonitis as a disease because they believe that the trigone naturally looks that way.

Overactive bladder syndrome patients may have frequency, urgency, and episodes of incontinence.

This disease is believed to be a neurological dysfunction of the bladder. It is called detrusor hyperreflexia when a neurological cause is known, and detrusor instability when there is no neurologic abnormality.

Interstitial cystitis, painful bladder syndrome, and frequency-urgency-dysuria syndrome are used interchangeably to describe urinary frequency, urgency, and/or feelings of pain or pressure around the bladder, pelvis, and perineum.

In patient and physician circles, we often worry far more about treating the symptoms than agonizing or debating over the "name" of the disease. If the patient is in discomfort, they need help regardless of its name.

Q: How Is IC diagnosed?

A: IC patients are diagnosed with an analysis of their voiding patterns, their symptoms, and the elimination of other diseases.

In a best case scenario, patients who are suspected of having IC complete a voiding diary over a period of time that will allow both the patient and physician to see the voiding patterns, urine volumes, and pain levels. If a diagnosis is suspected, the physician may then elect to perform other diagnostic tests to rule out other diseases. If these tests come out negative and the doctor strongly suspects the presence of IC, they may elect to perform a hydrodistention. By distending the bladder with water, they can then view the bladder walls for the characteristic petechial hemorrhages (glomerulations) found in many IC patients.

Other new diagnostic testing procedures are currently being researched.

Q: What are the treatments for IC?

A: In the years since the first formal meeting on IC in 1987, scientists have explored many potential and, in some cases, controversial treatments. Unfortunately, no one treatment has yet to be established as a "cure" for IC. Therefore, it is important to understand that most treatments are designed to alleviate symptoms rather than cure disease.

IC treatments generally fall into two categories: oral drugs or intravesical medications that are placed directly into the bladder. Oral therapies can include bladder coatings, antidepressants, antihistamines, antispasmodics, and bladder anaesthetics.

In addition, nerve stimulation, hydrodistention/hydrodilation, and surgery are used. Surgery, such as bladder augmentation or cystectomy, is usually considered only after all other treatment options have been explored.

Most doctors utilize their own experience with patients to help decide what treatment to recommend. It is comforting to know, however, that if the first selection doesn't help, there are many other approaches to try.

Q: Can dietary and/or lifestyle changes reduce the symptoms of IC?

A: Yes. Many patients have learned that diet can influence their IC flares. Foods that are highly acidic, alcoholic, and/or salty are well established triggers for IC. 

Q: What are the risk factors for developing IC?

A. In all honesty, I just don't know. It's clear from epidemiological research that some IC patients have a history of childhood bladder infections.

In addition, patients talk anecdotally about possible genetic ties. In my family, both my mother, sister, aunt, cousin, and grandmother have had a wide variety of bladder symptoms, though not specifically IC. In other cases, there has been some discussion of patients developing IC after surgical procedures or hospital stays. Yet these have not been decisively confirmed. We'll have to wait for more research to verify risk factors.

Q: Where can IC patients turn for support?

A: IC activities have now been developed in several countries including Australia, New Zealand, Canada, the USA, England, the Netherlands, and Germany. Our Internet support groups via the ICN offer the opportunity for patients from around the world to offer support to each other. In the USA, there are independent, hospital affiliated and/or ICA support groups. Patients have several options to explore based upon what is found in their region.

Q: What advice do you have for IC patients?

A: IC is a difficult disease to have because it is not visible on the outside. We face the unique challenge of having to convince doctors and family members and friends that we are truly uncomfortable and in need of care. I believe that patients need to be responsible participants in their medical care.

We can't expect to walk into a doctor's office to receive the cure. There is a chance we might have a doctor that doesn't even accept IC as a real disease. We have to be prepared to work effectively with our doctors, to gather information that could be helpful, and to be an active participant in our medical care.

A successful approach to IC is well rounded. Although we all wish that we could do just one treatment to cure our IC, this is not a reality at this point in time. Instead, we must try build a tool kit of effective strategies that work together to improve our lives and our IC.

Bladder treatments aimed at healing are a priority. Yet in addition, we also need a healthy balance of self-help strategies and diet. There has never been a more important time for an IC patient to learn good relaxation and stress management strategies.

And when it comes to our emotional well being, having IC can impact our relationships and family lives. This is a good time to focus on new skills, including the use of short term strategies like counseling.

Q: Is there anything I haven't addressed that you feel is important for women to know?

A: As a support group leader, one thing I see over and over are women who worry that if they slow down and rest, that they are "giving in" to their disease. Often, they force themselves to go to family and social events despite very difficult levels of pain because they want to be normal. Inevitably, their refusal to slow down can lead to agonizing levels of pain that are far more difficult to treat.

I believe very strongly that we must have a healthy respect for our limits. If we were in a car accident and had broken our leg, it would be in a cast and we would not be running on it. Yet with IC, we can't immobilize the bladder and, because patients can easily move, they forget that they are, in essence, wounded. A healthy respect for our body's need for rest, as well as early recognition of pain so that we don't make ourselves worse, is essential to long-term coping.

Lastly, many women feel that if they stop and rest, they are not being good mothers or wives. It can become a brutal cycle of despair and frustration in which they come to believe they don't deserve support from their family. They and we must remember that we all get sick. As mothers or wives, we would tend those we love. Yet when we ourselves are ill, we often don't ask for the support we need. Chronic illness does not change the love we have in our hearts for our families. Perhaps this is your time to let your family care for you.

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