(WOMENSENEWS)–Melissa Young felt the first pangs at age 14. The ache in her abdomen kept her up until dawn–as did her need to urinate 10 to 15 times per night.
Young sought the help of 12 doctors, but it took three years and five surgeries before a urologist finally diagnosed her with interstitial cystitis, a chronic bladder condition that affects a million Americans, 90 percent of them women.
“Before I was diagnosed, my doctors kept insisting this was all in my head,” says Young, now 21 and living in High Point, N.C. “They sent me to counseling and put me on anti-depressants. But if this was purely psychological, why would I be bedridden for most of the day? Why would I have to quit the soccer and track teams and miss my classes, my prom and my graduation?”
Difficult to diagnose because it is often confused with other health problems, interstitial cystitis, or IC, is caused when urine seeps through the bladder wall and irritates its lining. The condition can trigger such severe pain that it leaves sufferers unable to enjoy sex or even sit comfortably. There is only one FDA-approved drug and none that is 100 percent effective. Women’s health advocates say IC is often under-diagnosed and overlooked because women are the primary sufferers. But in recent years, health advocates have finally begun to expand research, improve treatment and take concrete steps toward finding a cure.
IC Causes Paralyzing Pain
When urine seeps into the bladder lining, this lining can bleed, scar and become so damaged that it is unable to hold normal amounts of urine. This is why IC patients can void their bladders up to 60 times a day and why they are often in unbearable pain.
“It started with a burning sensation every time I went to the bathroom,” says Lisa Cohan of Saylorsburg, Pa., who developed IC in 1999. “Then the pain migrated to my abdomen. Then it moved into my vagina. Within weeks, sex became so painful that it felt like being stabbed with a spear.”
For many sufferers, IC can be completely debilitating. “On a scale of 1 to 10, the pain rates a 15,” says Dr. Vicki Ratner, who developed IC in 1984 and went on to found the Interstitial Cystitis Association, a patient advocacy group based in Rockville, Md. “What makes it even more excruciating is that you can test and look perfectly normal. Viral and bacterial cultures and other indicators can all be negative, making it impossible for you to convince your doctor that you are in agony and in need of help.”
Because IC is so difficult to peg, the condition is usually diagnosed after all other possible causes (endometriosis, bladder cancer, kidney stones, vaginal infections, sexually transmitted diseases and neurological disorders) are ruled out. On average, it takes five to seven years to get a concrete diagnosis.
Though various treatments (including anti-seizure medications, painkillers and antihistamines) can be used to address IC, their efficacy varies from patient to patient. The one drug approved by the FDA–Elmiron, which helps repair the bladder lining–only works in a third of patients and takes an average three to six months to take effect.
IC often comes hand-in-hand with other chronic conditions, including irritable bowel syndrome, fibromyalgia and inflammation of the vagina and vulva. “Like IC, many of these problems are also affected by the nerves that pass through the lower spine,” says Dr. Robert Echenberg, a gynecologist at St. Luke’s Hospital and Health Network in Bethlehem, Pa. “And like IC, they involve pain signals that go firing off non-stop.”
Due to its inherent pain and debilitation, IC costs an estimated $1.7 billion in treatment and lost wages each year.
Medical Community Slow to Respond
For many sufferers, getting treatment for IC can be as excruciating as the condition itself. “When my doctors kept insisting that I didn’t have a problem, I began to wonder if I might be crazy,” says Cohan, who saw six physicians and was repeatedly treated for a non-existent urinary tract infection before she got an accurate diagnosis.
According to Dr. Echenberg, Cohan’s experience is a typical one. “Since IC can cause discomfort and pain anywhere in the pelvic area, patients end up going to see specialists in a variety of different fields: gastroenterology, orthopedics, chiropractic and gynecology. In many cases, specialists in these fields won’t even think to ask a patient about her bladder.”
In part because no one branch of medicine has claimed IC as its own, the health care industry failed for decades to adequately understand or treat the condition. Until the 1980s, IC was mistakenly assumed to be a rare, post-menopausal problem–even though symptoms may strike as many as one in four women and even though the average sufferer is only age 40. Until 1986, the medical text Campell’s Urology said IC was linked to “emotional disturbance” and could be “a pathway for the discharge of unconscious hatreds”–a description that patient advocates link to gender bias.
As they fight to give IC the attention it deserves, women’s health advocates hope to solve the remaining mysteries of the condition: Why women get it far more often than men, what the risk factors are and what causes the defects to the bladder wall that lead to the problem in the first place.
New Advances Offer Hope
Thanks to the work of patient advocates and pioneering physicians who have been battling to raise awareness for the past two decades, IC has finally come to be recognized as a legitimate medical condition. Since the 1980s, the Bethesda-based National Institutes of Health has devoted $100 million to studying the problem. Researchers have begun to address IC in medical journals and have developed an eight-question “pain-urgency-frequency” test that can lead to quicker diagnosis. According to a recent study in the Journal of Urology, IC diagnoses are up 50 percent since 1990.
Though there are still no one-shot ways of diagnosing or treating IC, doctors are making inroads. Using a procedure called cytoscopy, they’ve learned to identify ulcers and hemorrhages on the bladder wall that are telltale signs of the condition. They’ve also discovered that patients can dramatically reduce their symptoms by avoiding caffeine, alcohol, nicotine and spicy and acidic foods. Yoga, Pilates and other low-impact exercises to strengthen the muscles of the pelvic floor can help, as can alternative therapies like acupuncture and biofeedback.
Along with the physicians who are learning to diagnose and treat this condition, researchers are also making new strides. In September 2004, scientists at the University of Maryland isolated a toxin called an antiproliferative factor, which is present in the urine of 95 percent of IC patients. Researchers hope this discovery will enable them to develop a standard diagnostic test and possibly even a cure.
Government authorities are also stepping up to bat. In 2002, the Social Security Administration ruled that having IC entitled sufferers to receive government disability payments. In November 2004, Congressional legislators held the first hearing about interstitial cystitis on Capitol Hill.
Pharmaceutical companies are also on board. In 2005, drug companies in the United States will be running at least three large-scale clinical trials in an effort to develop new treatments.
“We’re finally giving IC its due,” says Dr. C. Lowell Parsons, a professor of urology at the University of California at San Diego. “Doctors now know what patients have long claimed: IC’s pain–and its root cause–really do exist.”
Molly M. Ginty is a freelance writer based in New York City.
For more information:
Interstitial Cystitis Association:
Interstitial Cystitis Network: