For 15 years, Lauren Stutman sought relief from her debilitating bladder pain. She saw more than 10 doctors, many of whom would assume she had a urinary tract infection and send her away with Ciproflaxin.
But the antibiotics didn't help, because Stutman didn't have an infection or any other problem detectable through the many tests she underwent. What she had were flares of pain between her belly button and her vagina that "felt like someone made tons of incisions and then poured lemon juice on them." At night she felt a frequent need to urinate — called nocturia — that at its worst had her getting up from bed "well over 50 times" to go to the bathroom.
"So I'm not really sick, and I'm not really healthy," said Stutman, 34, who would line her underwear with heating pads for relief. "It got to the point where I didn't see how I could live."
A pain and palliative care specialist (and a colleague of Stutman's) suggested Stutman look into interstitial cystitis/painful bladder syndrome, or IC/PBS. It's an under-the-radar chronic condition estimated to afflict some 3 million to 8 million women and 1 million to 3 million men in the U.S., according to the RAND Corporation, a nonprofit global policy think tank that has conducted studies on the subject.
Often confused with UTIs or overactive bladder in women, or with chronic prostatitis in men, IC/PBS has no standard definition. One widely accepted definition, from the Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction, describes "an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes."
Advocates have been heartened by increased attention to IC/PBS over the past two decades, including 2011 clinical guidelines from the American Urological Association. But awareness remains spotty, and many people suffer for years without knowing what's wrong or being told it's in their head.
Even researchers aren't sure what's wrong.
Just 5 percent to 10 percent of IC/PBS patients have the "classic" form of IC/PBS, diagnosable by Hunner's ulcers, which are inflamed lesions on the bladder wall. The vast majority of IC/PBS patients have no ulcers or other diagnostic clincher, just painful symptoms that generally get worse as the bladder fills and are relieved as the bladder empties. Ninety percent of these "nonclassic" patients without Hunner's lesions have pinpoint hemorrhages that appear when the bladder is distended, which used to be a diagnostic tool, but now it is shunned because the hemorrhages are not specific to IC/PBS, said Dr. John Warren, professor of medicine and epidemiology and public health at the University of Maryland School of Medicine.
Warren, who was part of a team convened by the National Institutes of Health in 1989 to try to pin down a cause, said potential culprits including infection, toxins, autoimmune issues and permeability of the bladder wall have not panned out.
What researchers have found is that people with IC/PBS are more likely than non-sufferers to have other functional somatic syndromes — in which there are symptoms but no detectable abnormality — including fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, migraines, chronic pelvic pain and vulvodynia (pain in the vulva).
An emerging hypothesis is that IC/PBS is one of a number of chronic pain diseases, that the problem is not with the bladder itself but with sensory processing, Warren said.
It takes a toll on people's lives. The pain, frequent bathroom trips and lack of sleep can interfere with work, families and sexual enjoyment. Depression and anxiety are common.
"There's a process of catastrophizing," said Dr. Robert Moldwin, director of the Pelvic Pain Center at The Arthur Smith Institute for Urology in Long Island and author of "The Interstitial Cystitis Survival Guide." "You're so stressed and anxiety-ridden and depression-ridden that it probably has an influence on the pain itself, and it's a vicious cycle."
Finding the right treatment requires trial and error.
Physical therapy to relax the pelvis, by applying gentle pressure on trigger points, is a first line of defense to manage symptoms, which commonly include spasms of the pelvic floor muscles, Moldwin said.
Also common are diet sensitivities, and many people find relief by limiting coffee, alcohol, citrus juices, artificial sweeteners, spicy foods or soda.
Other therapies range from the two prescription drugs approved by the Food and Drug Administration for IC/PBS (the blood thinner Elmiron and the muscle relaxer Rimso-50), to experimental treatments with Botox and Interstim, a bladder-nerve stimulating device. Some people find relief by injecting a anesthetic directly into the bladder through a urethral catheter.
Patients with Hunner's ulcers are treated through steroids or burning off the lesions. Rarely, the bladder might be removed.
Stutman, a psychologist in Los Angeles, tried many therapies before finding that her best solution was to stop fighting for a solution and accept that medicine could not help her.
"Something about that was very liberating," she said.
She practices breathing and mindfulness, and when she feels a flare coming on she "invites" her bladder to soften.
Her pain has subsided, she said, as well as the frustrations of convincing others of her "invisible" illness."
"The way that doctors communicate with us is very important," Stutman said. "Just to have some validation that this is real and (to) be believed."
For more information, visit the Interstitial Cystitis Association at ichelp.org.Copyright © 2015, Los Angeles Times