Interstitial Cystitis Association (ICA) staff report from the floor of medical and scientific meetings. We post summaries here of the meeting experiences. The team also tweets from ICHelp highlights of meeting sessions focused on interstitial cystitis (IC), painful bladder syndrome, and chronic pelvic pain. We post abstracts in the Literature Reviews and upload clips on the ICHelp YouTube channel.
ICA @ IPPS 2012
On October 18, 19, and 20, the Interstitial Cystitis Association attended the International Pelvic Pain Society’s 20th Annual Scientific Meeting. The meeting provided healthcare providers a detailed overview on the evaluation and management of chronic pelvic pain disorders.
June 1-3, 2012
The ICA recently attended a summer course held by the International Society for the Study of Women’s Sexual Health (ISSWSH) in Philadelphia, PA. Women with IC may have associated conditions such as chronic vulvar pain (vulvodynia). This course taught healthcare providers how to evaluate and treat such conditions. The 95 providers who attended the course included urologists, gynecologists, physical therapists, nurse practitioners, and psychologists. Many of the providers in attendance see IC patients regularly. Several of them agreed to be added to the ICA Healthcare Provider Registry. They also told the ICA that they use the resources on www.ichelp.org to educate their patients and themselves on the latest information on IC.
Among the specialists who taught sessions at the course was Amy Stein, MPT, author of Healing Pelvic Pain. She taught the attendees how to perform pelvic floor exams. She also taught them what physical therapy can do for pelvic floor dysfunction. Look for her exclusive video interview with the ICA coming soon!
Also speaking at the ISSWSH was Susan Kellogg-Spadt, PhD, co-founder of The Pelvic and Sexual Health Institute of Philadelphia. She taught the attendees medical and non-medical therapies for painful sex. She also taught them how to properly perform physical exams on women who have sexual pain.
American Academy of Pain Management
Along with lectures on pharmacologic and interventional treatments for a variety of pain conditions were presentations on CAM therapies such as acupuncture, dietary supplements, yoga, meditation, and cannabis for pain. Courses in hypnosis, osteopathic and physical therapy techniques, and motivational interviewing allowed pain care professionals to put more tools in their treatment arsenals. “Experiential” sessions let attendees learn firsthand about techniques such as QiGong, therapeutic stretching, and mindfulness meditation.
Most heartening was our discovery that IC is now very much on pain management’s radar screen. So many more of them this year said they knew what IC was and even treated it than we heard last year. A presentation about IC and pelvic pain was part of the program, and we were able to give those attendees copies of the Summer 2010 ICA Update with the new, preliminary IC clinical guidelines from the American Urological Association. Many pain management providers stopped by our booth to get the latest information from us and join the ICA provider registry.
It seemed that even more exhibitors, too, knew what IC was and were eager for information. In fact, our exhibit hall neighbor was a compounding pharmacy that knew about IC. That’s because both of the company’s representatives had IC themselves!
American Urogynecologists Society Annual Meeting
September 30 - October 2, 2010
Long Beach, California
Abstracts for the American Urogynecologists Society (AUGS) 31st Annual Meeting are posted on the Society’s website (www.augs.org). Below are short summaries of the sessions on interstitial cystitis.
New Research Finds IC Diet Not Need to Be SOO Restrictive
A cross-sectional study conducted by the University of South Florida found that the IC diet does NOT have to limit the majority of foods. Based on a web survey of 598 members of the Interstitial Cystitis Association (ICA), IC patients may need to avoid citric fruits, tomatoes, coffee, tea, carbonated and alcoholic beverages and spicy foods. However, researchers Stuart Hart, MD and Rene Bassaly, DO also concluded that IC patients may be able to reduce food sensitivities by consuming baking soda or Prelief prior to eating one of these trigger foods.
IC and Overactive Bladder (OAB)
To better understand the differences in IC and OAB, researchers reviewed the charts of patients with at least one diagnosis of urge incontinence. From this small study (21 patients), they found that 75% of patients with OAB who did not respond to anticholinergic therapy (ACT) had also been diagnosed with IC.
Pelvic Floor Symptoms in Patients with Fibromyalgia
Genitourinary symptoms are common in patients with fibromyalgia (FM); however, the exact nature of these symptoms is not well defined. To learn more, this research team surveyed female members of the Fibromyalgia information Foundation patient database. More than 200 women completed the survey. Most were in their 50s and had FM symptoms for more than 10 years. Researchers found that the tools used to evaluate pelvic floor disorders may not best for assessing genitourinary symptoms of FM patients.
Bladder Outlet Obstruction (BOO) in IC Patients
A retrospective chart review of IC symptoms, urodynamic test results, and bladder biopsy findings was conducted for 41 patients with IC, who has also had cystoscopies and bladder overdistention. In IC patients, high scores on O’Leary-Sant Problem and Symptom Index (ICSI, ICPI) questionnaires were significantly related to findings of BOO on urodynamics.
Hypnotherapy for IC Patient with Incontinence
Hypnosis helped this 29-year old women with IC and lifelong incontinence. She was taught to develop a mental picture of the link between her bladder brain connection, as well as general relaxation techniques. An audio recording supplemented this coaching. Urinary incontinence and daytime urgency decreased from 15 events per day to only 2 to 3 events per day. Nighttime urgency (nocturnal enuresis), which had been 2 to 3 times per night, reduced to a single incident over a 6-week period.
Acupuncture for IC
In this small pilot study (7 patients), researchers confirmed what many patients are learning about acupuncture and IC. Patients experienced some improvement in pain, urinary symptoms and sexual function. Want to learn more about IC and acupuncture? Check out the ICHelp YouTube videos with Anna Kelly, MD.
AUA Annual Meeting Highlights
The American Urological Association (AUA) annual meeting brings together international experts to discuss the latest discoveries and advances in urology and translate these findings into clinical practice. Throughout this week-long event the ICA reports from the floor of the meeting, updating patients, healthcare providers, and others who are unable to attend the meeting.
Also keep up to date with conference happenings through Facebook and Twitter.
AUA Conference Highlights by Year
Twitter: use hashtag #ICHELPAUA
ICS/IUGA Joint Meeting Report
In August the ICA and the Pelvic and Sexual Health Institute (PSHI) presented the findings of the ICA Complementary and Alternative Medicine study at the joint meeting of the International Continence Society and the International Urogynecological Association in Toronto.
There were also new and intriguing studies on sacral neuromodulation, botulinum toxin (Botox) injection in the bladder, steroid injections into Hunner’s lesions, and oral dextroamphetamine. Other posters and abstracts were on studies presented at previous meetings, which you’ve read about, or treatments that have already been researched and published on, but not in the countries of the presenters here.
Watch new videos of experts interviewed at the meeting on the ICHelp YouTube channel. Check out ICHelp tweets from the floor of the meeting - sign up to follow the ICA on Twitter for updates from future scientific meetings.
Society for Urodynamics and Female Urology 2011
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.
Revised June 21, 2012