The Pain That Affects Everything: Interstitial Cystitis

For most patients afflicted with interstitial cystitis (IC), their symptoms first began with the need to urinate more and more often. Similar to the urge felt when experiencing a urinary tract infection, it’s the feeling of urgency that, if denied, quickly develops into abdominal pain, cramps of the worst kind that, even when relieved, leaves the feeling of needing to go again soon. Leaving residual pain that drugstore medicines do little to soften. Over the weeks and months there are countless trips to physicians’ offices: gynecologist, OB, internist, urologist. And through it all is the pain and the need to use the bathroom again and again – sometimes as much as 30 times a day and 10 to 12 times at night. It hurts to stand up, is a nightmare to walk even a little distance and, in the end, there is only exhaustion and isolation. There is the feeling that no one understands what you must endure just to have the appearance of a normal life. How you must avoid certain foods, avoid stress. How you have become frustrated from the lack of sexual intimacy. The guilt you feel at limiting your activities with your children. The indignation you feel to be so at the mercy of retail clerks who watchdog the store’s "Employees Only" bathroom.

Welcome to the world of the IC sufferer.

Who gets IC?
Interstitial cystitis is a chronic pelvic pain disorder, an inflammation of the bladder that results in recurring discomfort or pain in the bladder and surrounding pelvic region. It is incurable and treatment success varies from person to person. While the exact cause is unknown, some researchers believe that it is an autoimmune response triggered by a bladder infection; others suggest it is caused by a bacterium that is undetectable by current urine testing methods.

About 700,000 people in the United States are affected by IC - 90 percent of them women. In women, symptoms usually worsen during ovulation and menstruation. Men may have pain or discomfort in the penis and scrotum. Symptoms of IC are usually first noticed between ages 18 and 40, although the average age of diagnosis is between 42 and 46 years old.

"My symptoms started in 1997, right after my honeymoon," says Michelle Frietchen, a hard-working market research program manager and energetic mom. "I had a variety of physical symptoms over the course of a year that were treated again and again with antibiotics – a skin infection, a burn, a urinary tract infection [UTI]. I had to use the bathroom a lot more than usual and there was pain – a lot of pain."

The pain, the need to urinate frequently and the interrupted sleep began affecting everything else in Frietchen’s life. "It got to the point where I had trouble completing anything I did. Forget extensive projects or outings with just my children and myself. I spent half my time in the bathroom and the rest of my time scrambling to make up for what I had missed. I began to wonder what was really wrong. Was it endometriosis? A tumor? Bladder cancer? I started doing research for myself and when I came across the description for IC, it fit."

How is IC diagnosed?
"The diagnosis of IC is one of exclusion," says Sandip P. Vasavada, M.D., Co-head, Section of Female Urology and Voiding Dysfunction, Glickman Urological Institute. In other words, after UTIs, bladder cancer, endometriosis, ovarian cysts and other things that cause similar pain and symptoms are ruled out, what’s left may be IC. "One of the symptom hallmarks of IC is when a patient presents with pain, usually they say that their pain gets better, even for just a short period of time, when they urinate," Dr. Vasavada says. "The pain returns once the bladder starts to fill again." Diagnosis is mostly based on the patient’s medical history and symptoms, he adds, but there are a few tests that can help confirm the diagnosis.

One of these tests is called cystoscopy with hydrodistension. During cystoscopy, the doctor uses an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light, the cystoscope, to see inside the bladder and urethra. The doctor will also stretch the bladder to its capacity by filling it with a liquid, usually saline, or gas. A small bladder capacity under anesthesia helps support the diagnosis of IC.

For patients with IC, bladder distention is painful, so the procedure is done using some form of anesthesia. During the procedure, physicians check the bladder for spots of pinpoint bleeding, called glomerulations, that are often, but not always, present in IC patients. Glomerulations are usually seen only after the bladder has been stretched to capacity. Although the presence of glomerulations is not diagnostic, it is suggestive of IC, Dr. Vasavada says.

Cystoscopy with hydrodistension also allows doctors to look for ulcers on the bladder wall and helps to categorize the patient’s IC as ulcerative or non-ulcerative. Ninety percent of patients have the non-ulcerative form - showing glomerulations but no ulcers. Patients with the ulcerative form have star-shaped sores called Hunner’s ulcers on the bladder wall.

Treatments for IC
Currently there is no cure for IC. However, patients can use various methods, medicines and devices to try to reduce their pain and symptoms. Right now, says Dr. Vasavada, the goal of treatment is to improve the quality of life for these patients based on their individual symptoms. For example, if a patient’s symptom complaints focus on urinary urgency and frequency but no pain, successful treatment might mean decreasing voiding episodes from 30 to 15 times per day.

Many sufferers have noticed that their symptoms have lessened when they made changes in their diet and environment. In particular, acidic foods like tomatoes and citrus, carbonation in drinks, vinegar-based items and chocolate act as triggers for painful episodes. Certain foods that stimulate the bladder, including coffee and spicy foods exacerbate symptoms, confirms Dr. Vasavada. Many IC sufferers develop extreme allergies, including animal and cleaning product sensitivities that call for a significant work or home life change. Other beneficial lifestyle changes that can help include stress and anxiety reduction.

Frietchen has made numerous changes in her lifestyle since her diagnosis. When she knows she has to give a presentation at work, fly on a plane, or participate in an all-day meeting where she won’t be able to use the restroom frequently, she restricts her eating, stringently avoiding caffeine and acidic foods for up to two full days ahead of time. "I also parch myself as much as possible. I hardly drink anything the day before and don’t drink anything but little sips of water the day of, "she says. "It works sometimes, although I know it’s not the healthiest technique. But that’s what I have to do."

Prescription Medications
Although some IC patients have a history of recurrent UTIs, IC itself isn’t caused by viruses or bacterial infections and, therefore, doesn’t respond to treatment with antibiotics. However, UTIs that occur in IC patients make symptoms worse and prompt treatment with antibiotics is recommended.

Currently, pentosan polysulfate, known under the commercial name of Elmiron, is the only FDA-approved medication indicated for the relief of bladder pain or discomfort associated with IC. The medication coats the bladder wall and is believed to buffer the bladder from irritants in the urine.

Because IC causes inflammation, which is an immune response, some IC patients may find medications directed at blocking the histamine reaction of the immune system, such as hydroxyzine (Atarax), also may be beneficial, says Dr. Vasavada. Tricyclic antidepressants, which can block certain chemicals from moving in or out of nerve endings, are sometimes used to relieve IC pain and urgency symptoms.

Nonsurgical treatments
Cystoscopy with hydrodistension, which is used to aid in diagnosis, also might be therapeutic, says Dr. Vasavada. "This procedure is beneficial in about 30 to 40% of patients, and the therapeutic effect lasts between four and six months," he notes. During hydrodistension, small nerves are stretched and damaged throughout the bladder. By the time the nerves re-establish themselves, the patient’s pain can be much decreased. Although the procedure has risks for some patients, including over-stretching the bladder and tearing the bladder walls, some patients return for repeat hydrodistension on a regular basis.

Another treatment option is intravesicle therapy, also known as bladder instillation, during which anti-inflammatory or analgesic medications such as a dimethyl sulfoxide (DMSO) solution or "cocktail" of multiple agents are inserted into the bladder by catheter. These medications remain in the bladder for about 15 minutes, and then are expelled. This therapy can be administered in the physician’s office or by the patient at home after they’ve received appropriate training.

Surgical options
Surgical treatment options include cystoscopy with burning or cauterization of ulcers. Another option, as a last resort, is complete removal of the bladder with diversion of urine to a catheter or stoma. Dr. Vasavada cautions that patients with severe pelvic pain may still have pain despite bladder removal. He says that in these patients the bladder might not be the only cause of their pain and that nerves in the bladder region also may be contributing to the pain.

For patients with urinary urgency and frequency but not much pelvic pain, one option may be an outpatient procedure called sacral nerve stimulation. During the surgery, electrodes are threaded near the patient’s tailbone to the sacral nerve. A small nerve stimulator device is sewn into a pouch-like area created in the upper region of the patient’s buttock. When the unit is turned on, it emits continuous electrical pulses on the sacral nerve. "Neuromodulation has produced some of the biggest successes in our practice for appropriately selected patients," comments Dr. Vasavada.

Keeping informed is the best medicine
Frietchen herself has tried oral medications, hydrodistension, and even clinical trials; but nothing has helped her. "You learn to cope," she says with a smile and a small shrug. "My husband’s family loves a variety of food dishes that have a tomato sauce base. I avoid foods that have tomato as much as I can and deal with the flare-ups when they happen. When we go out with other couples, we take separate cars so they won’t be inconvenienced if I need to make several stops along the way. You develop a thousand ways to keep on going."

Frietchen has received the most help from an IC support group where she learned that treatments affect everyone differently. "That’s the weird thing about IC - what might bother me might help somebody else," she says. She has also found a great resource in the website for the Interstitial Cystitis Network [www.ic-network.com], which provides comprehensive information about IC as well as links to local support groups, IC friendly foods and beverages.

"My goal, and I think the goal of every IC sufferer, is to find the root cause of this disease so that we can create a cure for it now," says Frietchen. "It affects everything I do and my dream is for it to be gone."