For people with interstitial cystitis, it’s the only way they can get relief from unrelenting pain
By Susan Stevens: Daily Herald Staff
Published: 10/8/2007 12:32 AM
Halfway into her 20-minute commute to Deerfield, Barbara Zarnikow of Buffalo Grove would stop at a hotel to use the restroom. On road trips, her husband knew to pull off at every rest stop. Seeing a concert meant standing in the back, where she could slip into the restroom several times without disturbing everyone. Zarnikow wasn’t incontinent. She was in constant, visceral pain, pain she could relieve only by emptying her bladder. “It’s like having broken glass inside you,” she said. A typical day meant 40 trips to the bathroom. At one point, she quit working for a year because the pain was so debilitating. It took several years and several doctors, but Zarnikow finally received a diagnosis of interstitial cystitis, or painful bladder syndrome, a chronic condition that results in very frequent, urgent trips to the bathroom as well as pelvic pain.
The diagnosis is not clear-cut; many women, like Zarnikow, struggle for years before they find a specialist who recognizes the syndrome. Nor is there a treatment that works for everyone. The result is some women suffer debilitating pain in secret. Difficult diagnosis Originally, doctors thought interstitial cystitis was a rare disease afflicting post-menopausal women. They now believe it can affect any age group. A recent study estimated more than 700,000 people in the U.S. are affected, 90 percent of whom are women. Because of the pain and the limits imposed by remaining close to a bathroom, some people cannot work, care for their children or have sex. Some patients have committed suicide. “I was in pain all the time, so I wasn’t a happy, playful mother,” said Rhonda Garrett, a board member of the Interstitial Cystitis Association. “Other mothers are out in the street playing kickball with their kids, and I would be sitting in a chair watching.” Garrett quit work and quit having sex with her husband, which caused pain that lasted a week. She repeatedly was diagnosed with urinary tract infections, even though urine cultures came back negative for bacteria. Because her doctor detected blood in the culture, he assumed the infection was too new to register. “They’d prescribe antibiotics, and it never worked,” Garrett said. That’s a common experience, said Dr. Peter Sand, director of urogynecology at Evanston Northwestern Healthcare and a professor at Northwestern University Feinberg School of Medicine. Sometimes women are diagnosed with endometriosis, which can also cause pelvic pain. It typically takes women four years to get a diagnosis, Sand said. But that’s an improvement; it used to take six to eight years. Part of the problem is there is no sure-fire way to diagnose interstitial cystitis.
A cystoscopy — in which a doctor uses a scope to look inside the bladder — can often find tiny hemorrhages that are a hallmark of the condition. But the appearance of the bladder can vary widely, Sand said. Another test involves inserting potassium chloride into the bladder. A patient with a normal, healthy bladder won’t notice any difference. Most people with interstitial cystitis will report intense pain, but not everyone. Researchers are working to develop a test based on a type of protein found in the urine of some people with interstitial cystitis. Meanwhile, doctors usually perform tests to rule out other problems, such as cancer, and question a patient about her symptoms. “Usually we rely on symptoms, because no tests are accurate in all cases,” said Dr. Mary Pat FitzGerald, a urogynecologist and associate professor at Loyola University Medical Center in Maywood. What’s in a name Scientists don’t know what causes interstitial cystitis, though one theory links the pain to a defect in the inner lining of the bladder. This lining usually buffers the bladder from urinary toxins.
Other theories suggest the pain and urinary frequency result from an allergic or immune response that creates inflammation. Some women experience flares before they menstruate, suggesting a hormonal influence. Some doctors believe men diagnosed with chronic nonbacterial prostatitis may in fact have painful bladder syndrome. The lack of evidence pointing to a specific cause leads to another problem: what to call it. Literally, interstitial cystitis means inflammation of the inner wall of the bladder. But there’s not much evidence the problem lies in the wall of the bladder, and most biopsies show no inflammation, FitzGerald said. So now doctors and researchers favor the term “painful bladder syndrome” instead in interstitial cystitis. “The idea of broadening the term is to broaden our thinking and our treatments,” FitzGerald said. Not everyone welcomes the new name.
Patients, support groups and insurance companies continue to use interstitial cystitis. Garrett fears changing the name will destroy the progress patients have made in raising awareness. “They’ve done all this work to finally get doctors to start recognizing and diagnosing and treating it as a real disease,” she said. “The fear is that by changing the name, you’re somehow undermining its presence.” FitzGerald, however, says the name shouldn’t matter. “It doesn’t matter what the words are as long as you’re being offered treatment,” she said. Finding relief Zarnikow’s pain drove her online, where she learned about interstitial cystitis. The symptoms of urinary frequency and pain fit. But the urologist didn’t agree. He prescribed medication to slow her bladder urges. “It caused my bladder to hold urine longer, and it made my pain worse,” Zarnikow said. Meanwhile, Zarnikow was staying late at work just to delay a painful walk across the parking lot. She found herself stopping for bathroom breaks in questionable neighborhoods. But few people know what was wrong with her. “You feel people get tired of hearing about it,” she said. “If you’re not diagnosed, you’re going to a doctor who makes you feel like a crazy person. So you don’t talk about it a lot.” A second urologist suggested surgery to widen Zarnikow’s urethra. She declined.
Finally, her internist suggested she see a urogynecologist, a gynecologist with an interest in the female urinary tract. When Zarnikow’s pain was too intense for the two-month wait for an appointment, the urogynecologist got on the phone and prescribed Elmiron, or pentosan polysulfate sodium, the only oral drug approved for interstitial cystitis. The doctor later confirmed Zarnikow’s diagnosis. “The good news was I had interstitial cystitis, but the bad news is it’s a condition that they have some treatments for, but they don’t work for everybody,” Zarnikow said. “I took a lot of different medications.” There are no blockbuster treatments for painful bladder syndrome. Elmiron takes months or years to work, and some women say it doesn’t help them.
Another drug, DMSO, can be inserted into the bladder; it, too, works for only some women. Doctors can prescribe narcotics and other pain blockers, as well as antidepressants. Some women respond to electrical stimulation of the nerves to the bladder through an implanted pacemaker. Yoga, meditation and acupuncture can all help people in chronic pain, including painful bladder patients. Anecdotally, FitzGerald said, some women get 100 percent relief from a particular type of physical therapy that works to release the shortened, tense muscles supporting the bladder. Results of a study she led to examine the technique will be out late this year. “If that pans out, that may be the most promising treatment so far,” FitzGerald said. The key is finding the right physical therapist, FitzGerald said. The therapist should have experience in pelvic muscle release work, rather than pelvic muscle strengthening. Strengthening exercises, or Kegels, are commonly used to treat incontinence, but will actually make the pain worse for someone with painful bladder syndrome. “This is a stinker, this is awful, but for the majority of patients we control their symptoms or make them 80 to 90 percent better,” Sand said. “The hard part for patients is finding someone who is interested in caring for people with interstitial cystitis.
People can also seek treatment at a center that specializes in pelvic pain, FitzGerald said. That includes the Rehabilitation Institute of Chicago or Rush University Medical Center. Zarnikow says having a diagnosis helped her, even if it didn’t point to a breakthrough treatment. “Before I really had my diagnosis, I didn’t tell many people what I had,” she said. “Even my husband, who knew I was sick and in pain, didn’t realize the extent of it. He was shocked when I told him I was in pain every day of my life.” Today, Zarnikow follows a strict low-acid diet, which rules out chocolate, tomatoes, citrus, alcohol and many spices. She does yoga. She has tried antidepressants and acupuncture, both of which helped. She’s also learned to be an advocate for herself. She carries a laminated card that explains she has a medical condition; it eases her way into not-so-public restrooms. “This is my story, but it’s a very common story,” she said. “It took me five years to be diagnosed, and in that time my condition got worse. I’d like to help others so they didn’t have to go through what I did.” When her treatments began to work, Zarnikow put out a few brochures to start a support group. Within two days, three women called her. Now a group of a dozen or more women meets regularly at Advocate Lutheran General Hospital in Park Ridge. “These women walk in and say hi, my name is so-and-so, and start to cry, because they found someone who understood what they have,” she said.