Finding a doctor or medical care provider to work with can be very difficult and it’s not unusual for patients to have seen five or more physicians before receiving a correct diagnosis. Why is it so hard? Put the blame on medical schools who simply don’t provide much education about these conditions. Throw in the fact that bladder and pelvic pain isn’t visible to the eye and it’s not surprising that many doctors give patients a prescription of antibiotics and then send them on their way. If you don’t have health insurance and cannot afford a visit, look for local free clinics in your area. You may also qualify to receive free medical care by participating in an IC Clinical Trial.
- Local vs. Regional vs. National Specialists
- Other Doctor Referral Lists
- IC Researchers & Clinical Trial Sites
- Alternative/Integrative Doctors Health Providers
Local Doctors vs. Regional Doctors vs. National Specialists
Many patients start with their local primary care providers who, after excluding UTI, usually refer patients to local board certified urologists and/or urogynecologists. These specialists may or may not be interested in working with IC & pelvic pain patients. If they suggest that IC is emotional and/or tell you that there are only two therapies for IC, they are clearly NOT informed. You can, of course, bring them some information on the treatment of IC, such as the AUA Guidelines, but fair warning, some simply don’t have an interest.
If you have not responded to therapy at a local clinic, you can ask for a referral to a regional specialist and/or university health center. These tertiary care centers often have a much better depth of experience diagnosing and treating IC and/or pelvic pain. In the San Francisco Bay Area, for example, patients from nine counties are often referred to urology departments at Stanford or UCSF. These larger clinics may also perform IC research and have their own team of professionals including: nurse practitioners, physical therapists, dietitians and psychologists.
The IC Network maintains a free database of medical care providers (doctors, physical therapists, dietitians, therapists) across the USA and Canada who have a strong interest in treating IC & PFD. Check our list here!
Patients with the most challenging cases of IC/BPS often seek a national and international specialists. These providers have decades long experience working with IC/BPS and pelvic pain and are veritable masters at diagnosing more complex cases and providing care. They frequently participate in national clinical trials, provide training on IC/BPS to other medical care professionals and are featured speakers at urology conferences and patient events. There are roughly about a dozen clinics of national reputation, including:
- William Beaumont Hospital, Royal OK MI – Dr. Ken Peters
- LIU Smith Institute for Urology, Long Island NY – Dr. Robert Moldwin MD
- Univ. of Rochester, Rochester NY– Drs. Robert Mayer & Edward Messing
- Wake Forest University, Greensboro NC – Dr. Robert Evans
- Institute for Women In Pain – Dr. Robert Echenberg
- Univ. of Pennsylvania, Philadelphia PA – Dr. Phil Hanno
- Pelvic & Sexual Health Institute – Dr. Kristene Whitmore, Jennifer Fariello NP
- Stanford University, Palo Alto CA – Dr. Christopher Payne
- Univ. of California, San Diego CA – Dr. Lowell Parsons
- Univ. of Iowa, Iowa City IA – Dr. Karl Kreder
- Northwestern University, Chicago IL – Dr. Anthony Schaeffer
- Glickman Urological & Kidney Institute, Cleveland Clinic, OH – Drs. Dan Shoskes & Ray Rackley
Other Doctor & Physical Therapist Referral Lists
- Herman Wallace is the leading training organization for physical therapists who treat pelvic floor disorders. They maintain a list of physical therapists who have taken their courses!
- American Urogynecologic Society offers an on-line searchable database of urogynecologists
- International Pelvic Pain Society – Professional members of the IPPS have a strong interest in treating pelvic pain disorders including IC. This listing includes not only urologists, but also ob-gyn’s, physical therapists and more.
- AUA Urology Care Foundation offers an on-line searchable database of urology professionals.
- 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 Researchers & Clinical Trial Centers
Physicians and clinics that conduct research on IC/BPS are found throughout the USA, Canada and the world. Here in the USA, 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 movement 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.
Alternative/Integrative/Holistic Doctors & Health Care Providers
There is no doubt that alternative therapies have merit when working with IC/BPS and other chronic conditions. From acupuncturists to naturopaths, there are a growing number of physicians who use alternative therapies as part of their treatment approach. Dr. Geo Espinosa ND, LAc, for example, is a naturopathic doctor and acupuncturist who founded the Integrative Urology Center at New York University Langone Medical Center. We’ll be adding more to the ICN database as we find them.
However, you should also practice caution when exploring alternative treatment. Some alternative providers suggest that they are physicians when they have, in fact, not attended medical school. A Ph.D. is not an MD. Some chinese herbalists, for example, 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.