Local, Regional and National IC Specialists
Local Care Providers
Many patients struggling with bladder or pelvic pain start with their LOCAL primary care providers who, after excluding UTI, usually refer patients to local board certified urologists and/or urogynecologists.
Don’t be surprised if:
- they don’t believe that IC or pelvic pain is real
- they offer old, outdated therapies
- they treat IC out of a textbook that’s ten years old (i.e. using Elmiron or DMSO as the only therapies)
- they are reluctant to provide pain medication
- they are unaware of the role of the pelvic floor in bladder/pelvic pain conditions
- they may not perform pelvic floor assessments nor offer referrals to physical therapy
The challenge with local providers is that few have an interest in treating pelvic pain, which requires more patience and more training. Due to limited budgets, local providers may rarely attend conferences such as the AUA which provide the latest courses on pelvic pain treatment strategies, including IC.
Your best defense is an educated offense. You should walk into those clinics thoroughly knowledgeable about your treatment options. Don’t forget that the AUA Guidelines has a six step treatment protocol with more than a dozen treatment possibilities. You can, of course, bring them some information such as our Treatment Checklist but fair warning, some simply don’t have an interest or may have an ego so large they won’t read the materials you provide.
You are truly blessed if you have a local provider who is passionate about treating IC and/or pelvic pain. Treat them kindly and bring cookies at least once a year!
If you have not responded to therapy at a local clinic, you can ask for a referral (or second opinion) 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 Stanford or UCSF Hospitals.
The good news is that many, but not all, regional centers with large urology clinics have more knowledge and experience working with complex bladder and pelvic pain. They should be doing a diagnostic assessment that follows the AUA Guidelines, INCLUDING a pelvic floor assessment. They should be utilizing treatments that are current, such as rescue instillations, etc.
Many of these larger hospitals may also perform IC research and have their own team of professionals including: nurse practitioners, physical therapists, dietitians and psychologists.
Fair Warning – Some of the best hospitals in the country still may not be that interested in treating chronic pelvic or bladder pain. A good example is the Mayo Clinic (Minneapolis) which is excellent working with cancer patients, but not so much with chronic pain disorders.
Patients with the most challenging cases often seek a national or even international specialists. These providers have decades long experience working with IC/BPS, prostatitis 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:
If a national center is near you, such as within a three or four hour drive, please make an effort to visit their clinic. That longer drive early in your treatment could save you years of struggle to find a physician who really, truly believes that you are suffering and wants to help!