01-09-2008, 08:45 AM #1
Did you know that there are four levels of clinics that might treat IC?
I'm repeating here what I just offered by PM to an IC patient who was frustrated with a local urologist who wouldn't offer more than the basic treatments. I hope this helps us all understand just how these clinics differ, etc. - Jill
Local Urology Clinics
The smaller urology offices in smaller towns or just small clinics run by one or two doctors are usually the first line of intervention but they often don't have the funding, resources, experience and/or knowledge of newer therapies. They often stick to the conventional Elmiron, DMSO approach to treating IC though many more are finally using rescue instillations with great success.
Regional Urology Clinics
Thus, we then look for larger clinics in more urban areas that have a strong interest in IC, female urology and/or pelvic pain. They tend to have five or more urologists on staff, one of which is usually interested in chronic bladder disorders or female urology. They may also have a pelvic floor specialist that they refer patients too. These clinics usually have the resources to attend more conferences and often offer the traditional AND more experimental therapies, such as botox. Dr. Jay Burstein and the DeKalb Clinic (Illinois) is a good example of a regional urology clinic.
University Medical Centers & Medical Schools
We then look at University run Medical Centers and Schools which function, primarily, as referral centers for the more complex cases that the smaller clinics can't or won't handle.
The advantage of a university medical center urology clinic is that they see far more patients, have more experience with diagnostic methods (inotherwords, they often do a cystoscopy with less pain and discomfort because they have so much more experience.) Stanford University, for example, the primary referral center for Northern California and they are superb at diagnosis, assessment and offer a wide variety of treatments available.
Universities are also far more heavily involved in some IC clinical trials that are testing new potential treatments for IC. Many pass rigorous reviews from the National Institutes of Health that prove that the doctors have sufficient knowledge, staff and resources to conduct studies. These researchers are almost always found at the big IC conferences and thus are on the absolute cutting edge of IC.
IC Specific Clinics
Though few and far between, there are clinics devoted specifically to IC/pelvic pain. Dr. Moldwin, for example, does run an Interstitial Cystitis Center at the Long Island Jewish Medical Center. It doesn't pay all the bills though and may just devote two days a week to IC though some centers do offer daily instillation therapy. Most urologists see a wide variety of patients with other conditions besides IC.
What I look for, often, are doctors who attend conferences, conduct some research and facilitate IC support groups because that tells me that that doctor really understands the support and care that IC patients need.
Hope that helps!
JillWould you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Diana Brady CNC on alternative medicines. http://www.icnsales.com/icn-personal-coaching/
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Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.
01-09-2008, 08:49 AM #2
Thanks for the info Jill. I kinda go to a place that is inbetween those. My dr is not an IC speiclaist but a gyn who specializes in pelvic pain and is dealing with all of my pelvic pain issues and really is the most amazing dr.Christine
I have been diagnoised for 2 1/2 years. I have tried every oral med as well as rescue instills and DMSO.
1st hydro 4/07 which showed no visible signs of IC but I had tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. I am still feeling the effects of the hydro two weeks later.
This 2nd hydro proved that because no treatments have helped me that my IC has progressed
Am being seen by Dr. Hanno's office in Philly
None of my medicine or treatments are important anymore. One of our best IC sisters Barb has been taken from us too early. She was such a great friend to me, I feel like there is a part of my heart that will always be empty now that she is gone.
Proud wifey of Shane, mommy of Griffin, and step-mom to Logan, Gage and Miranda
Also proud new mommy to the best Bullmastiff puppy on earth
01-09-2008, 08:56 AM #3
My former and my current doctor are heavily involved in seminars involving IC and pelvic pain.
Thanks for sharing that information. Hopefully it will help people to not be so frustrated when they see a uro at first and feel that they aren't getting the help they need! It may take some valuable time and money, but there are doctors out there that can help! My first doctor was a regular uro, but he honestly tried the basics to help me and once he realized I was beyond his basic knowledge of IC he knew to refer me to another doctor that specialized in pelvic pain.
01-09-2008, 09:21 AM #4
- Join Date
- Jan 2003
Thanks for the breakdown Jill.
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