For years, physicians thought women suffering from interstitial cystitis were hysterical. Now there’s professional recognition—and hope.
Originally published in Self.
ON MARCH 7, 2002, PAUL MCLEAN returned to his Arlington, Virginia, home from his office at the U.S. Department of Defense and found his wife had committed suicide by shooting herself. “Diane decided she’d had enough,” says McLean. An adventuresome woman who had lived all over the world, she could no longer work in her garden, go shopping with her daughter or do any of the things that used to bring her joy. For 24 years, she’d battled interstitial cystitis (IC), an incurable, often debilitating and extremely painful bladder disease. And though she took prescription narcotics to dampen her near-constant agony, the pills did little to make living easier. “Diane said it was like someone twisting a knife inside her,” says McLean. Ultimately, Diane chose to surrender, and, says McLean, “I lost my best friend.”
Taking one’s own life is, of course, the most extreme reaction to an incapacitating illness, but for sufferers of IC (there are about 1 million in the United States, the vast majority of them women) it may seem like there’s no other way out. Indeed, many IC patients do have suicidal thoughts, says urologist Philip Hanno, M.D., of the Hospital of the University of Pennsylvania in Philadelphia. There’s no understanding what IC feels like unless you have it, but imagine the worst urinary tract infection you’ve ever had and multiply the pain, burning and constant bladder pressure by 100. That’s not all: Women with IC also have the urge to urinate between 30 and 60 times a day. Despite the feeling of having to go, it may be difficult to actually do so because the pelvic muscles may tense or the bladder might be nearly empty from so many trips, says Terry-Jo Myers, 40, a professional golfer from Fort Myers, Florida, who was diagnosed 20 years ago. “But urinating—even a drop—was the only time I got real relief from the pain.” At least courses on the LPGA tour have portable toilets throughout, making frequent bathroom stops easy. Other women with IC don’t even enjoy that tiny salvation. “When I’d go shopping, I would have to run through parking lots just to get to the bathroom,” says Iliana Brockman, 41, of Tampa, Florida, who has battled IC since 1999.
IT’S ONE THING TO HAVE A HORRIFICALLY PAINFUL disease, but it’s quite another to have a horrifically painful disease that doctors believe is feminine hysteria. And until very recently, that’s exactly what women with IC had to contend with. “We used to think it was all in their heads,” says David Kaufman, M.D., assistant professor of clinical urology at Columbia University College of Physicians and Surgeons in New York City. The physicians who didn’t completely dismiss their patients’ concerns often misdiagnosed them with endometriosis or UTIs. What’s more, until the 1980s, IC was predominantly viewed as a rare, postmenopausal disease. As it turns out, a quarter of those with the problem are younger than 30.
It’s taken a dedicated, two-decade grassroots awareness campaign to convince doctors that IC is a legitimate medical condition, one characterized by an extreme oversensitivity of the bladder, likely caused by damage to the organ’s inner surface lining. Dr. Kaufman compares this lining to a Gore-Tex layer. “If there are defects in that layer, urine seeps through and irritates the nerve endings, causing inflammation and intense pain,” he explains. Theories abound as to how the breaks originate, but no one really knows. At various times, doctors have blamed everything from genes to infections to antibiotics.
Though recognition of IC among doctors has increased—in fact, diagnoses have jumped 50 percent since 1990, according to a study in The Journal of Urology—many still don’t know enough about it. Kristina Hinchliff, 30, an artist and stay-at-home mom in Portland, Oregon, spent more than six months visiting different physicians before she was diagnosed. The last doctor she saw examined the inside of her bladder for ulcers and hemorrhages. Sure enough, the test, which involves stretching the organ with water, then looking at it with an internal scope, revealed tiny bleeding points with starburst-like rays. Hinchliff was lucky—up to 10 percent of women don’t have the telltale signs, and many are diagnosed only after everything else (kidney stones, cancer) has been ruled out.
The constant pain and frequent urge to urinate may leave women who go undiagnosed and untreated unable to work or leave the house. In the months before she found the right combination of drugs to relieve her symptoms, “it took over my life,” says Hinchliff. She used to call in sick to work at least twice a week. And because the bladder is located so close to the vagina, pressure during intercourse can make sex unbearable. “I sometimes stayed on the LPGA tour eight weeks in a row so I didn’t have to address that issue,” confesses Myers. With that sense of isolation compounded by pain, it’s easy to see why women like Diane McLean are driven to despair. Myers, too, almost committed suicide one night in 1992. “I couldn’t envision living another 50 years in pain,” she says. “I wanted to say good-bye to my daughter, so I stopped in her room while she was sleeping. That’s when I realized that I had never been a mother to her because of this illness, and I just couldn’t take myself away from her,” she says.
THERE IS STILL NO CURE for IC, but doctors are now able to offer some help. Antihistamines, antidepressants, urinary anesthetics and antiseizure medications have all been used successfully to treat symptoms, though their effectiveness varies from patient to patient. “If something doesn’t work, we move on to something else,” says Robert Moldwin, M.D., director of the Interstitial Cystitis Center at Long Island Jewish Medical Center in New Hyde Park, New York. Only one oral medication, Elmiron, is approved for IC; it’s thought to work by reinforcing the protective interior surface of the bladder. Some patients, such as Myers, have had great relief, though the drug is effective in only about a third of patients, says Dr. Hanno.
Like most IC sufferers, Hinchliff takes a combination of drugs. She also keeps the narcotic Vicodin on hand for her most excruciating flare-ups. “I don’t feel as housebound,” she reports. “Some days are bearable. Other times it feels so bad, I could throw up.”
Such inconsistent relief is insufficient. The Interstitial Cystitis Association, a patient-advocacy group in Rockville, Maryland, has lobbied aggressively for more research funding, and its efforts have been paying off: Last year, the National Institutes of Health allocated $5 million for IC research. And that gives patients hope. “The exciting thing is that 15 years ago, there was almost nothing,” says Vicki Ratner, M.D., an orthopedic surgeon who’s had the condition for 20 years and is president of the association. “Now there’s an international community of researchers. That we have come this far is just phenomenal.” In the future, it’s hoped that all IC patients will be as fortunate as Myers is today: “I have my life back,” she says, “and it’s wonderful.”