ICA report from Phoenix, Arizona—IC was a major focus of the Society for Urodynamics and Female Urology meeting here, especially about the epidemiology of IC. We are—and will be—learning much more about who gets it and when, the care patients are getting, how IC affects patients’ lives, and the connection with other health conditions. The meeting also provided a glimpse at what the Multidisciplinary Approach to Chronic Pelvic Pain research will yield, what and some maverick ideas about what may kick off IC and how to treat it. And it all wouldn’t have happened without the work of the ICA, said many researchers who thanked the ICA for bringing the attention and research dollars to the work to conquer IC.

The Rand IC Epidemiology (RICE) study already helped us learn that from 3 to 8 million US women have IC symptoms and may have IC, but Sandra Berry from the RAND Corporation told attendees here about much more that RICE information is telling us. About a third of the women got their IC diagnosis from a nonurologist and around a fifth by a urologist. As we might have expected, the data showed that women got many diagnosis and saw many doctors over the years.

75% of Urologists Aware of IC & Comfortable Treating IC

At least most urologists today are familiar with IC, found Rob Moldwin, MD’s, team at Long Island Jewish Health System. Almost three quarters of the urologists they surveyed were aware of IC and said they felt comfortable treating it. But about a seventh of the urologists were aware of IC and didn’t feel comfortable, another seventh were aware and chose not to treat IC, and almost a tenth had doubts whether it is a real condition or don’t believe it exists.

The most common reasons that the urologists who didn’t like to treat IC gave is that they don’t enjoy working with IC patients and they’re frustrated that they can’t cure them. And unfortunately, about a third said urethral dilations were helpful, but this procedure is not considered appropriate today.

Interestingly, many urologists, especially younger urologists, were positive about alternative therapies, with nearly 90 percent saying diet is helpful, and nearly 80 percent saying “behavioral” approaches, such as counseling, yoga, or meditation, were helpful.

Although there was good news on urologists’ awareness, most were still using cystoscopy and hydrodistention to make a diagnosis, which is not standard practice today.

Update on the Rand IC Epidemiology (RICE)

Berry and her team also found that 90 percent of patients with IC symptoms did seek care, but less than one third had seen a urologist and only a tenth were under a urologists’ regular care. Most were getting care from primary care doctors. Unfortunately, few of the women received IC-specific treatment.

Self care among the women was very common, with somewhat more than half avoiding certain food and drink, mostly based on their own experience rather than on the recommendation of a physician. Many were also using stress reduction on their own, such as participation in religious activities or meditation.

Many women with IC symptoms did have other conditions, with depression being the most common, affecting almost half. But the proportions of those with other symptoms were lower. Migraine, irritable bowel syndrome (IBS), and panic each affected about 20 percent; fibromyalgia affected only about a tenth and chronic fatigue syndrome only about a twentieth. Mental health symptoms and migraine were more likely to start before IC than the other conditions. A positive was that most who were depressed were getting treatment.

Berry also noted the strong impact IC had on women’s sex lives. A study on that was published recently, which you can read about in the literature review on our website. IC also affects women’s working lives, using up most of the sick leave they have available. Just under half of women with symptoms were not working at all, although only about a tenth said it was because of bladder pain and symptoms.

Soon, more analyses of the RICE data will tell us about the long-term effects of IC and women’s access to care for their symptoms.

Data from RICE and urine samples will be available for other researchers to use in the near future.

Boston Area Community Health (BACH)

The Boston Area Community Health (BACH) study is also telling us more about who has IC. Interestingly, the prevalence of what BACH defined as painful bladder syndrome symptoms went up in women in the perimenopausal years and decreased after menopause. There was a moderate rise in the prevalence again in elderly women. We should be hearing more about IC from the BACH study at the American Urological Association meeting in May.

Multidisciplinary Approach to Chronic Pelvic Pain

MAPP researchers told the audience about the theories they are trying to test, for example, is IC a local disease or does it come from a whole body syndrome, what predicts whether symptoms will get worse, whether there are other useful biomarkers, and whether infection of any kind plays a role in flares.

At the Northwestern University study site in Chicago, David Klumpp, PhD, and his team are looking at a model of pelvic pain that is showing that a particular chemokine might be a valuable marker, that “organ crosstalk” may play a role in IC pain, that urinary tract infection might kick off chronic pelvic pain that lasts, and that more benign bacteria that cause UTIs but don’t produce. The team is also looking at bacteria that infect the urinary tract but don’t cause symptoms may alleviate the pain of bladder infections.

“What we envision one day,” said Dr. Klumpp, “is that, after we understand the rules for how these structures [of the more benign bacteria] can cause different pain responses, we’ll then, via organ crosstalk, be able to use engineered designer probiotics to treat chronic pelvic pain via the gut or some other route.”

The Latest on Antiproliferative Factor (APF)

Susan Keay, MD, PhD, from the University of Maryland reviewed her research on antiproliferative factor (APF) and the role it may play in IC. Although APF clearly differentiated those with IC from those without, coming up with a test that your doctor can use has been tough. The APF signal is so small, that it’s very hard to amplify it to a measurable level. The very common technique of using antibodies to the substance you’re looking for just didn’t work out, and although the idea isn’t entirely off the table, Dr. Keay may be looking for ways to detect the APF peptide on its own, which will be a challenging task.

Do NSAIDs and Their Cousins (Ibuprofen and Aspirin) Contribute to IC?

Raymond Rackley, MD, from the Cleveland Clinic in Cleveland, Ohio, moderated a session about IC that updated his colleagues on current treatment and research. But he also spoke about his own maverick ideas about what may trigger IC and what treatments may be helpful that most other urologists have not put into use. Based on his basic research on the biochemical pathways that may be involved in the IC disease process, he believes that nonsteroidal anti-inflammatory drugs (NSAIDs) and their cousins, such as ibuprofen and aspirin, may contribute to the destruction of the bladder lining in susceptible people and kick off the disease process. Those drugs inhibit production of prostaglandins, which he believes may be protective, so he has his IC patients stop taking NSAIDs and instill a prostaglandin-type drug in their bladder. You can read more about his approach in the Tame Your Bladder reprint article from the ICA Update.

Update Article Reprint: Tame Your Bladder

Doing your own bladder instillations gives you the power to get relief when you need it. And today, new instillation cocktails and systems may offer you much more than “rescue” from a bad flare. Learn how to do your own instillations, how to make them comfortable and safe, and what the latest cocktails are.

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Revised Tuesday, May 12th, 2015