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New in 2008! The medical care needs of IC patients are often very diverse. Patients often work with a wide variety of medical care providers, nutritionists and educators. Luckily, there is a growing community of experts who may be able to help. This new, searchable database was developed using patient recommendations, medical clinics that have asked to be listed (ICN Professional Subscribers) and NIDDK IC research centers. It includes local, regional and university based urology and/or urogynecology clinics, physical therapists, pain specialists, dietitians, and educators/coaches available by phone.

We strongly encourage you to be an proactive and informed consumer. The most successful patients are those who educate themselves about IC, who work as a partner with their physicians and who use self-help strategies (such as diet modification) consistently. One great resource is the IC Survival Guide which will help you discuss the pros and cons of potential treatments with your physician. If you don't have it, get it!

Disclaimer: This list was created for informational purposes only. It was developed using the names of ICN Professional Subscribers, names of clinicians who have expressed an interest in interstitial cystitis, bladder pain or pelvic pain disorders and/or who may have been recommended by a patient. Listings do not constitute a recommendation or endorsement of that clinic, nor do they guarantee any standard of care. In no event shall the ICN be liable for any decision made or action taken by you in reliance on the information provided by this list. The ICN shall not be liable for any damages, including direct, indirect, incidental, special, consequential or any other type of damage.

 

We're looking for recommendations!

Are you an IC patient who has found a compassionate provider?? Someone who treats you with respect and compassion?? Someone who is up-to-date on current therapies. Please share their names with us so that we can contact them and, if possible, share their names here. Click here to make your suggestions.

Need to add or update your listing?

Are you a medical care provider who would like to be listed or need to change your listing??? You must have a current, active ICN Professional subscription to do so. If you do, please email your change of information to: jill@ic-network.com.

If you would like to have your clinic information added to our site, please renew your ICN Professional Subscription today. Once your order is processed, we will contact you for additional details. In the meantime, please take a moment and draft your interest statement. We'll also need your website address (if available) and/or any IC related projects that you might want to list.

Finding an IC Specialist

The most frequent question that we receive on the IC Network is how to locate medical care providers who are compassionate and knowledgable about IC. Most IC/PBS and/or bladder pain specialists are practicing urologists and/or urogynecologists with a smaller group of ob-gyns, internal medicine specialists and naturopaths who have a strong interest in the treatment of IC. You may also find a growing number of nurse practitioners who work exclusively with IC and/or pelvic pain patients.

An ideal situation is to work with a urologist who is certified by the American Board of Urology. Why?? You deserve the most experienced and qualified care providers. Board certification requires that they have finished an additional five years of training in urology, usually at a major university (i.e. such as Stanford), where they have developed a wide range of skills in diagnosis, treatments, and pain care. They often have a depth of experience that helps them promptly and compassionately treat IC patients.

We urge caution when working with alternative specialists (i.e. herbalists, chinese herbalists, acupuncturists) for several reasons. Some suggest that they are physicians when they have, in fact, not attended medical school. A Ph.D. is not an MD. Some are not aware of the difference between interstitial cystitis (i.e. bladder injury) as compared to cystitis (i.e. infection) and have sold products that have badly irritated the IC bladder. Others have refused to disclose the ingredients of "herbs" they are selling and/or charge exorbitant phone consultation fees to treat patients by phone. Diagnosis and treatment by phone is questionable and, in some states, illegal. . Most states (particularly California) require that medical care provider see you "in person" before recommending a course of treatment so that they have the chance to examine you personally and exclude other potential conditions.

How do we find a care provider who is knowledgeable about IC?

• ICN Provider Listings - Searchable by state, our list is composed of ICN Professional Subscribers and/or specialists that have a strong interest in IC. These care providers have solid reviews from the patient community.
• ICA Physician Registry - The ICA's physician list is available via email or snail mail. You may request up to three states and/or international health care providers.
• AMA Doctor Finder - An on-line resource of the American Medical Association and allows you to sort by specialty and zip code. This is an ideal way to research urology professionals in your area. We encourage you to then contact those clinics and ask if they treat IC patients.
• Local IC Support Group Leaders - Your local, regional or state IC support groups can share the names of those doctors who are the most favorably reviewed and appreciated in your community.
• Ask other patients in your region - Network with other patients in your area to find those care providers who are particularly supportive.

IC Research & Clinical Trial Centers

Physicians and clinics that conduct research on interstitial cystitis/painful bladder syndrome (IC/PBS) are found throughout the USA, Canada and the world. Clinics and researchers funded by the NIDDK have passed rigorous training and reviews to participate in the larger national studies. Thus, their knowledge levels are generally quite good.

The advantage of going to an IC research center is that they have a depth of experience that many local clinics will not have. They see thousands of patients are year, often the more complex cases. The staff generally attend the most important IC research conferences thus should be up-to-date on the latest IC advances and treatments. If they ask you to participate in a research study, you usually receive your medical care and medications at no charge.

The disadvantage of going to an IC research center is that they need participants for their studies and will encourage you to participate. It's vitally important that you put your health first. Some clinical trial participants may receive a "placebo" rather than a real medication for their IC thus setting their own progress back for several weeks or months.

Participating in a clinical trial is a very generous gift to the IC community because are helping to advance the knowledge of IC. We thank you sincerely for your efforts. Yet every study does have risks. Make sure that you carefully review the potential list of risks and side effects before you agree to participate in any study.

Click here to visit our ICN Clinical Trials Center for a list of current studies and clinic locations.

Find a Physical Therapist

The newest area of specialty in the IC movement is the treatment of pelvic floor dysfunction and muscle tension, usually at a specialized clinic and/or by a physical therapist who has a strong interest in treating pelvic pain disorders. Physical therapists have a wide variety of experience and training. Physical therapy for pelvic floor dysfunction may take several months of therapy depending upon how long you have had your symptoms and/or how advanced your case is. Success often depends upon your commitment to a DOING daily home exercises and relaxation programs. Embarking upon this treatment requires true commitment on your part.

There are only two ways to find physical therapists interested in PFD:

• The ICN Provider Listings include a wide variety of physical therapists who work with IC, pelvic pain and pelvic floor dysfunction. Searchable by state.
• International Pelvic Pain Society Listing offers a searchable database by name, country and specialty.

Find A Counselor/Therapist

It's no secret. Having any chronic illness can play hell on our personal and professional lives at times. From the anxiety of receiving a diagnosis of a new condition to depression when pain occurs, it's very important that you, the IC patient, have a way of easing your heart and your soul. You've done nothing wrong. Having IC is like being in a car accident. It happens suddenly and is often overwhelming. Luckily, there are several counselors on the web and in your community who would like to help you.

• The ICN Provider Listings includes some counselors and therapists who not only suffer from IC themselves, but also specialize in working with other IC and pain patients. Searchable by state.
• American Psychology Association - has a searchable database on-line by zip code, city or state to help you locate a professional in your area.

Find A Dietitian

Are you confused about what to eat?? Worried that you are not eating enough?? Have you read the IC diet books but are still confused?? A registered dietitian may be able to help you navigate the IC diet so that you can eat healthy and still enjoy each meal. Luckily, more and more dietitians are learning about IC due, in great part, to the groundbreaking work by IC patient and registered dietition Julie Beyer RD, author of Confident Choices: Customizing the IC Diet.

• The ICN Provider Listings include atleast one registered dietitian, available by phone, who provide coaching by phone. If you're concerned about if you're eating a balanced diet, this is definitely worth considering.
• Confident Choices - IC diet & lifestyle coaching in person or by phone.
• American Dietetic Association - Find A Professional

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