(By Jill Osborne, MA - ICN Founder)
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. While IC is now more known throughout the urology professional communities, there are still areas of the USA where knowledge is slim, particularly the Southern states. There are also some “old school” urologists who don’t believe in IC or who provide minimal treatment. As thousands of patients can attest, finding the perfect doctor your first try is quite rare. Many patients see several before they find that “one” professional who truly helps them. Here are some suggestions that may help you in your search for a great IC medical care provider.
#1 - Locating Potential Candidates
Whenever you start a search for a new physician or physical therapist, the first place to begin is a local IC support group. Try to attend a local meeting where you can ask patients about their experience with physicians and also ask the group leader about those physicians and clinics that receive the best reviews. Click here for a current list of groups & group leaders.
If you’re in a small town or a rural part of the country, look to nearby urban centers and, ideally, university affiliated hospitals and clinics. Universities are usually referred the most complex patients in their area, thus are the most adept at treating complex urinary problems, including IC. They are also tend to be more experienced at diagnosis. It’s worth the drive!
The web offers several different physician finder services that are searchable by zip code, city or state that might help you locate more candiates.
Please note that some clinics and doctors change interests. None of these lists are perfect and may contain the names of the clinics that have changed direction away from IC. Thus, to rule those out, move to the next step, contacting the clinic directly.
#2 - Contact The Clinic & Request An Appointment
Call their office and ask if they treat interstitial cystitis. If they do, make an introductory appointment and please let the receptionist know that you would like some office time with the physician to discuss his approach to treating IC. Don’t forget to bring your ICN Medical Records File or summarize your treatments and tests on just one or two sheets of paper.
#3 - Talk the doctor & support staff
During this first appointment, tell your doctor that you are looking for care for possible interstitial cystitis and that you would like to hear more about how they work with IC and/or pelvic floor dysfunction patients. Make it a point to ask the doctor a few brief yet probing questions.
- How many interstitial cystitis/painful bladder patients have you treated?
- What tests do you perform to make a diagnosis of IC? (Ask if you can provide test results done in the previous year by another professional.)
- What treatments do you typically work with? (Preferably, you’ll want a doctor who can provide several different types of therapies from oral medications, rescue instillations, other instillations etc. etc.) A worrisome point is if they mention the older, more outdated therapies as primary treatments, such as Chlorpactin, Silver Nitrate. If they mention the newer therapies, such as heparin instillations, in addition to the IC staples of antihistamines, antidepressants, Elmiron and even Botox, it shows that they are more up to date.
- What treatments have you had the most success with?
- What treatments have you found to be less successful?
- If I have an IC flare, who would I contact in your office for assistance?
- Do you work with pelvic floor dysfunction or make a referral to a local physical therapist who works woth PFD?
- Do you provide pain care or make referrals for a local pain center?
- What advice do you commonly give to your IC patients?
During the appointment, try to talk with the nursing and support staff. They are often the lifeline of IC patients and can be your advocate. Say Hi and ask them for tips on working with their clinic. You know… the classic do’s and don’ts!
- Ask them what their policy is for a possible UTI. Can you drop by to leave a urine sample if you think you might have a bladder infection? Should you call first??
- Will the nurse advocate for you with the doctor, perhaps when you need prescriptions refilled.
- How easy is it to get an appointment, especially if you’re in a painful flare?
#4 - Selecting A Provider
Ultimately, you’ll have to choose someone based upon their experience with IC and their bedside manner. Are they knowledgeable about new treatments?? Are they experienced with IC? Were they kind to you?? If you’re getting good vibes from the staff, physician (and the local support group) then you’ve found a clinic that is worth trying.
Fair warning.. your progress will depend upon the amount of effort you put into learning about IC, your treatment options, self-help strategies at home, diet modification, etc. etc. It’s never good to walk into your doctors office and say “I’m desperate. I don’t care what you do, just do something.” There is no excuse for not knowing what a doctor puts into your bladder. You must be a part of the decision making process. Be an active participant. Bring your IC Survival Guide with you to appointments so that you and your doctor can discuss the pros and cons of any treatment. If not you, then who should take charge of your bladder? It’s you!
#5 - If You’re Asked To Leave
If a physician simply doesn’t have any other treatment ideas, they may send you to a more experienced clinic or IC specialist. This is a good move. You want to be with the most experienced doctors in your region. Certainly, many patients have chosen to leave a practice on their own in search of someone who is more compassionate or skilled. This is your right and, in many cases, a good option.
But, if you’ve been “asked to leave” several physicians, take a moment and ask yourself what happened. A successful physician-patient relationship is built on trust, honesty and good communication. Some patients cross the line to the point that staff don’t want to work with them anymore. They may call too often or are rude on the phone. They often refuse appointment times that are available. They may be late to appointments. Some show no determination to help themselves (i.e. the IC diet or participating in a pain management program.) Some simply ignore doctors instructions or fail to comply with a drug contract. Lying to your physician, particularly about medication, is doom.
Remember, how you act with your physician also reflects on the other IC patients in that practice. Show them that we are well prepared and active patients, determined to help. Your knowledge of IC, determination to be a proactive patient and acts of kindness towards staff may reflect on the next IC patient who walks through the door.
Comments?? Disagree with me?? Have a story to share??? E-mail me now at: jill@ic-network.com
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