L to R: Dr. Buffington, Tina, support group member Lisa Stoof, Dr. Gilleran.

Taking care of all your IC challenges was the focus of the Columbus, Ohio IC support group's second annual regional forum where experts in urology as well as rheumatology, psychology, neurology, sexuality, gynecology, physical therapy, and self-care spoke to the attendees. Eighty-five IC patients, friends, and family came to Columbus to learn from these experts, network with each other, gather valuable information and products from the ICA and other exhibitors, and even participate in IC research. Attendees came not just from Ohio, but also from Indiana, Pennsylvania, Kentucky, Michigan, West Virginia, Colorado, Illinois and Florida, noted support group leader Tina Gilfilen.

"Again, this year we couldn't have done the forum without the help and knowledge of Tony and Jason," said Tina. That's because Ohio State IC researcher Tony Buffington, DVM, PhD, and Ohio State urologist Jason Gilleran, MD, had fellow research and clinical associates follow their generous example to donate their time to speak. Two of last year's speakers were back by popular demand: urologist Bruce Woodworth, MD, and physical therapist Cathy Konkler.

Central Ohio patients remember the former Columbus urologist fondly. Today, Dr. Woodworth practices in Knoxville and teaches at the University of Tennessee School of Graduate Medical Education. The philosophy there, he said, is to sit down with the patients and find out what works for them. That means that he and his colleagues are doing more to treat the whole person, not just bladder symptoms, and are taking much more of a "custom fit" than an incremental or shotgun approach to therapy.

But that doesn't mean these doctors have a lot more time to spend with patients, so he had some wise advice on how to make sure that you get quality time in the doctor's office. Be prepared with information on where your disease and treatment stand by having lists of medications and voiding and symptom diaries for the doctor and have a list of questions and concerns so you can get them all answered. He noted, too, that many practices now give you an opportunity to have more time to get support, advice, and treatment from "physician extenders" (usually nurses or physician's assistants) who are well trained in IC, who can spend more time with you, and may be easier to talk to because you'll usually have the chance to talk to someone of the same sex, whereas your doctor may not be.

He had an important and hopeful message for IC patients: inevitable progression of IC is a myth. "The disease does not have to march on to some horrible end. We have seen wonderful situations where the disease has been arrested."

He also had plenty of valuable clinical tips he has learned, not only from research but also from patients' experience. "You people have an underground," he quipped.

Attendees register and browse the exhibitors' displays outside the Wexner Auditorium at the Ohio State University College of Veterinary Medicine.

Patients who have had difficulty affording pentosan polysulfate (Elmiron) have found that glucosamine/chondroitin sulfate supplements (which many people take for arthritis) are helpful because they may have a similar, bladder-coating effect.

Dr. Woodworth and many IC patients know that avoiding irritants by modifying diet and using acid-reducer supplements is very important for symptom control, but he also emphasized that tobacco is an irritant, too, and how important it is not to use it.

Some useful medical approaches include drugs that affect the central and autonomic nervous system as well as the urinary tract. The antidepressant duloxetine (Cymbalta), which was found to tighten the urinary sphincter and relax the bladder, has worked for some patients, but not as well as IC clinicians had hoped. Alpha blockers are still being widely used. For some patients, the anticonvulsants gabapentin (Neurontin) and pregabalin (Lyrica) are useful. The antimuscarinics he finds most useful are solifenacin (Vesicare) and trospium (Sanctura) because their active forms are excreted in the urine, so they may work through the urine in addition to the bloodstream. Unfortunately, these are more expensive than other antimuscarinics that have gone generic. Opioid medications can be used, but he recommends them as a last resort.

Easing over-activated mast cells with type 1 histamine blockers has been a standard IC treatment, but Dr. Woodworth said he has had more success with the type 2 histamine blockers, such as cimetidine (Tagamet), ranitidine (Zantac), or famotidine (Pepcid).

Participants gather in Wexner Auditorium to hear the presenters.

Also very helpful are urinary tract painkillers, such as Pyridium, UTA, Prosed, and Urelle, a re-entry to the market of a methenamine blue combination. Much more than he did when he practiced in Ohio, he recommends weekly bladder instillations, given in the office or self-administered by patients at home, with a combination of heparin, bicarbonate, bupivacaine, and a steroid. He called DMSO "iffy" for some patients, noting that it can be quite painful. He also noted that using lidocaine jelly at the urethra and small catheters (such as 10-French or smaller) make instillations easier for many patients.

Use of procedures, including botulinum toxin A (Botox) injection and nerve stimulation, has grown. Botox, he said, is not designed for pain but is helpful for overactive bladder symptoms. He and his colleagues also implant many sacral nerve stimulators, but they are also using posterior tibial nerve stimulation with an acupuncture needle at the ankle that is hooked up to a stimulator for 30 minutes once a week. This also helps frequency more than pain. Sacral and pudendal nerve blocks are also an option, he said.

Also growing more popular are ancillary treatments, such as general exercise, pelvic floor physical therapy, stress management, psychological therapy, hypnosis, and more, "including a good attitude that you're going to keep fighting."

Some treatments on the wane are Clorpactin, BCG, silver proteinate (Argerol), and bladder removal, although bladder removal may still be justified when maximum bladder capacity gets below 350 mL (about 1½ cups), he said.

Dr. Woodworth noted a trend in IC research and care that was reflected in the broad range of presenters at this meeting: "The more we study associated disorders, such as irritable bowel syndrome, fibromyalgia, vulvodynia, endometriosis, and chronic fatigue syndrome, the more we think that they're the same response to the same problem in different organ systems."

Offering their expertise on treatment and trends in those associated disorders were four other specialist presenters, a rheumatologist, a neurologist, a sex therapist, and an obstetrician gynecologist.

Rheumatologist Kevin V. Hackshaw, MD, from Ohio State's Division of Immunology/Rheumatology, showed that recent research in fibromyalgia has finally legitimized the condition. The FDA's recent approval of Lyrica for fibromyalgia was especially helpful. After all, "would the FDA approve a medication for condition that doesn't exist?" he said. Magnetic resonance imaging studies clearly showing that fibromyalgia patients have less blood in the brain regions that process pain also helped. It's also evident that patients don't hurt because they are depressed. In fact, treating pain often relieves depression.

Dr. Hackshaw believes that the most helpful treatments are exercise and pharmacologic therapy with antidepressants, analgesics, and anticonvulsants, such as Neurontin and Lyrica. If an opiate is needed, the most appropriate one is tramadol (Ultracet). He noted that gentle aerobic exercise, such as walking on a treadmill for 30 minutes six days a week, is even more important than stretching. Anticonvulsants can also have positive effects on sleep and irritable bowel syndrome.

Morning speakers and panelists. L to R: Kevin Hackshaw, MD, Mark Elliott, PhD, Nicolas Verne, MD, Tom Chelimsky, MD, Bradford Fenton, MD, PhD, Bruce Woodworth, MD.

He pointed out that it's important to make sure your symptoms aren't the result of other conditions that can produce fibromyalgia-like pain. These conditions can include, but are not limited to, hypothyroidism, lupus, rheumatoid arthritis, Lyme disease, or vitamin D deficiency.

Because he has noticed a high rate of IC in his patients, neurologist Thomas Chelimsky, MD, from University Hospitals in Cleveland, Ohio, is beginning a study of the connection between IC and disorders of the autonomic nervous system, the system that "makes the brain jive with your body," he explained. Some of those disorders are postural tachycardia (fast heartbeat when you stand up), fainting, Raynaud's syndrome (blood vessel constriction in the hands and feet), complex regional pain syndrome, and cyclic vomiting. With Dr. Buffington, he is beginning a study on the possible connection, and patients from Ohio were able to volunteer for the study right there at the forum.

Patients had more than one opportunity to participate in research. Ohio patients also had an opportunity to participate in a study to find a new way to diagnose IC that Dr. Buffington, Dr. Gilleran, and an Ohio State nutritionist are working on.

Bradford Fenton, MD, PhD, from the Summa Hospital System in Akron, Ohio, is also doing research, looking at treatment of pelvic pain at the other end of the body, the brain, where pain is processed. Brain stimulation has the potential to reduce pain, and we should be hearing more about the results of this research in the future.

Mark Elliott, PhD, from the Institute for Psychological and Sexual Health in Columbus, helped attendees see how to adapt their sexual life to their limitations and spoke about vulvodynia research and treatment. Research is showing how very important sexual function is in people's lives and how much suffering and deterioration in quality of life there can be when it is impaired, which is helping researchers and clinicians give sexual challenges the attention they deserve for IC patients. With 68 percent of IC patients having some form of sexual dysfunction, their sexuality really needs that attention.

He urged attendees to be creative problem solvers and focus on what sexual expression is available to them rather than what isn't. That actually means expanding your sensual repertoire instead of limiting it, he said. He emphasized that a positive attitude is of prime importance-it even affects the hormonal environment. In addition, touch enhances the immune system and contributes to healing, another reason to work on adapting your sexual life instead of neglecting it. He urged attendees to be proactive in preparing for sex, for example, by taking muscle relaxants beforehand.

Medical concepts about painful sex are changing, he noted, since it's clear that women with IC can have pain, not just with intercourse, but with arousal and more. Theories about what causes the pain are changing and include increased vascularity, nerve activation, and pelvic floor dysfunction. Treatment depends on understanding what part of sex hurts.

"This was a very empowering meeting" was a typical comment from participants, Tina told Café ICA, so it's no surprise that Northeast Ohio support group leader Laura Santurri was among the most popular speakers. "Take your life back from IC," was her message, and she is helping people with IC in Northeast Ohio do just that through the Stanford chronic disease self-management program specifically adapted to IC.

Afternoon speakers. L to R: Cathy Konkler, PT, Donna Carrico, NP, and Laura Santurri, MS.

This program isn't meant to substitute for medical care but rather to help you work more effectively with your healthcare team and be proactive about improving your quality of life. The six-week course, two and a half hours a week, with 12 to 16 people in each class, is led by a peer leader, like Laura, who is living with the condition and is trained and certified in the program. Laura offered this program to people with IC for her masters project (and now she is working on her PhD in behavioral epidemiology), and she will continue to offer the program through IC Support, her expanded support effort to serve those with IC in both the Akron and greater Cleveland areas.

The program's goal is to help you become an active self-manager of your disease, that is, as a partner and active participant in your healthcare team. The program emphasizes your right and responsibility to make treatment decisions and teaches techniques that can help you break pain and symptom cycles. Symptoms start with the disease, said Laura, but each contributes to the other and can make things worse, and techniques such increased physical activity, relaxation, distraction from pain, and healthy eating can help ease symptoms. Participants learn these techniques as well as how to manage fatigue, work with doctors, and become a proactive problem solver and better communicator.

Another popular speaker was Donna Carrico, NP, who is program coordinator of the Women's Initiative for Pelvic Pain and Sexual Health (WISH) program at William Beaumont Hospital in Michigan. She helps women with IC to use the mind-body connection to ease pain, especially though the use of guided imagery, and she has developed a guided imagery CD specifically for women with pelvic pain and IC. (See http://www.ichelp.org/cafeica/Vol07No01.html#3.1). Activating the relaxation response, she said, can help break the cycle of increased urgency and pain that often comes in response to stress.

She and the urologists at William Beaumont have seen how much pelvic floor dysfunction contributes to pain, so they use pelvic floor physical therapy a great deal for women with IC, as well as guided imagery, which helps those muscles to relax. Their research showed that urgency and pain scores went down 45 percent in women who used the guided imagery CD, and they are repeating the study with an effort to find out what chemicals in the body change with the relaxation response.

Similar efforts use the mind-body connection for healing, such as the Stanford Protocol detailed in the book, Headache in the Pelvis. But whatever technique you try-meditation, Yoga, journaling, Tai Chi (especially good for fibromyalgia, she said)-being consistent with those techniques is key, she said.

With the growing recognition of how much physical therapy can help IC patients, physical therapist Kathy Konkler, of Rehabilitative Associates, Inc, in Columbus, has a busy practice helping them. She explained how the musculoskeletal system affects pain in the bladder, where the pelvic floor muscles are, and how they interact with your bladder, your other muscles, and your whole body. She uses internal techniques, such as trigger point release in the pelvic floor, emphasizing that work on your external muscles and your whole body is also essential.

To test whether the physical therapist you are considering knows how to treat pelvic pain, she recommends asking if the therapist does internal assessment and work. You can find therapists through the ICA and the American Physical Therapy Association's section on women's health (http://www.womenshealthapta.org/).

Dr. Buffington's own research is based on the idea that IC may be a problem of the whole body that happens to affect the bladder in people and cats who have IC. Much more research needs to be done, but doctors, nurses, and support group leaders, like those at this meeting, are already putting that idea to work to help heal the whole you.