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Diagnosing interstitial cystitis/painful bladder syndrome (IC/PBS) can be complex. IC/PBS—which affects 3 to 8 million women in the United States—is a chronic condition that includes unpleasant sensations (discomfort, pain or pressure) that—patients perceive—originate from the bladder. An IC/PBS diagnosis can be made after a specialist determines symptoms have lasted for more than six weeks when there are no other identifiable causes, such as a urinary tract infection. Simply, this is a diagnosis of exclusion—some research shows it can take four to five years from the initial visit to correctly diagnose IC.
Waiting for a diagnosis can be stressful, and painful, for many patients. But providers can change the narrative around IC/PBS by having educational, evidence-based conversations with patients regularly.
Leading Patients to IC/PBS Relief
“When it comes to diagnosing interstitial cystitis, the first step is to obtain a complete and thorough assessment,” said Woojin Chong, M.D., a urogynecologist at Inspira Medical Centers Vineland and Mullica Hill. “If the patient’s history, physical and pain evaluation confirm their condition, then helping patients find relief from interstitial cystitis requires a step-up approach: starting with the least invasive treatment to more invasive treatment options.”
Treatment for IC/PBS may include:
- Patient education and behavioral modifications, including avoiding bladder irritants and reducing stress
- Physical and medical therapy
- Cystoscopic evaluation with hydrodistention of the bladder
- Botox injections in the bladder or neuromodulation
- Oral chemotherapy
- Diversion of bladder or bladder removal
Having “The Talk”
IC/PBS can appear in patients in their 20s, 30s and in the years directly following menopause. Younger patients may also experience co-conditions such as chronic pelvic pain, irritable bowel syndrome, fibromyalgia, endometriosis and dysmenorrhea. That is why educating patients, especially younger women, at the primary care level can be a life-altering intervention.
“Inspira physicians are doing a great job. We must continue reassuring women, especially young women, that what they are going through is not fake. Their pain is real. Their perception is real,” said Dr. Chong. “By helping patients understand their condition and delivering more information and resources, they will be able to better cope with what they have. Patients don’t always need surgery. What they might need is just some simple education and behavioral modification techniques.”
Patient Education and Behavioral Modifications
“Educating patients about their condition allows you to set proper expectations. IC/PBS isn’t like a broken bone—there is no one treatment to take away the pain completely,” said Dr. Chong. “Because the bladder is an extremely sensitive organ and anything we eat or drink can irritate it, taking a conservative approach first can often lead to more immediate relief.”
- For diet: Ask patients to avoid carbonated or caffeinated drinks. Anything we consume can latch onto the bladder lining and cause irritation.
- For lifestyle: Deter patients from smoking, using illegal drugs or consuming large amounts of alcohol. All of these can irritate the bladder.
- For bladder control: Ask patients to empty their bladder on a regular schedule. IC/PBS often comes with an overactive bladder and leakage that can further complicate the condition. With pseudo bladder training, patients can begin to regain control.
“If those changes do not alter the patient’s condition, move on to the next steps,” said Dr. Chong. “That includes seeking physical therapy, pain management and medical therapy.”
- For pelvic floor relaxation: Pelvic floor therapy is a great pain management tool. Physical therapists know how to teach patients to relax pelvic floor muscles.
- For pain management: Refer patients to a pain management team. These experts can assist with dietary changes and auxiliary management techniques like using a heating pad.
Understanding Medical Therapy as a Treatment Modality
Another component in treating IC/PBS is medication, some of which is offered orally or through bladder instillation. “Currently, there is only one FDA-approved oral medication for IC/PBS, but it has a slim success rate of about 30-50 percent. Yet off-label drugs like amitriptyline, which blocks pain receptors; antihistamines to relieve pain and decrease the frequency of urination; and H2 receptors, which mitigate stomach secretions and pain, have shown greater success in patients,” said Dr. Chong.
Treating IC/PBS with medication can be arduous for patients. But having a team of gynecologists and urologists who are dedicated to this cause can be pivotal in your patients’ care plan.
“There is a dichotomy between oral medications and those absorbed via bladder instillation—currently at a better effectiveness rate and without causing systemic side effects,” said Dr. Chong. The common medications instilled in the bladder include heparin, lidocaine with bicarbonate with or without steroid or antibiotic solutions. “The pain management options exist on a spectrum, which is why the expectations we set for our patients are improved with open conversations.”