The IC Underground

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!

Jill

One of the criticisms we see frequently are worries that many nurses, particularly those in ER’s and general practices, don’t seem to really know about IC. True. IC courses are usually found at urology conferences such as the event below. The Society of Urologic Nursing has done a superb job educating nurses about the latest advances in interstitial cystitis/painful bladder syndrome. Below is their announcement for their upcoming 2008 symposium on pelvic pain…. which will, yet again, be discussing IC. - Jill
Urologic Nurses To Enhance Their Knowledge Of Pelvic Pain, Urodynamics Knowledge At Annual Symposium

The Society of Urologic Nurses and Associates (SUNA) will hold its Annual Symposium: Pelvic Pain and Pelvic Floor Disorders, February 28-March 2, 2008, at the Tampa Marriott Waterside Hotel and Marina, Tampa, FL. The symposium will highlight the latest evidence-based treatments for pelvic pain and pelvic floor disorders, as well as urodynamics and advanced urologic practice.

Participants will have the opportunity to earn continuing education credits, attend research luncheons, network with colleagues and explore the exhibit hall to learn about technologies and products. A dynamic faculty of nurse practitioners, physicians and physical therapists will present education sessions. The complete registration brochure is available on SUNA’s Web site, [url]http://www.suna.org[/url].

Program

On Thursday, February 28, The Basic Urodynamics preconference workshop will begin. This 9-hour workshop is part of the symposium’s comprehensive 18-hour urodynamics (UDS) track which meets the training recommendations set forth by the International Continence Society (ICS). Those who participate in the complete program will earn a SUNA certificate of attendance for urodynamics that is approved by ICS.

On Friday, February 29, other preconference workshops will be offered covering such topics as pelvic pain, interpreting and documenting urodynamic studies, biofeedback and electrical stimulation, and urinary incontinence in long term care.

On Saturday, March 1, Joseph Schaffer, MD, will present the opening session, “Approach to Pelvic Pain in Women.” He will evaluate different advances and treatments for female pelvic pain.

Concurrent sessions will run March 1-2, and are divided into four tracks. Topics include:

- Advanced Practice: Urologic coding and documentation; understanding the role of the continence nurse specialist; mental health issues and chronic pelvic pain among Latinos; treating genital tract infections.

- General: Urinary tract infections; pediatric urinary incontinence; shy bladder syndrome; bladder outlet obstruction in women.

- Pelvic Pain/Pelvic Floor Disorders: Using botulism toxin in pelvic pain; gastrointestinal disorders associated with pelvic pain; treating interstitial cystitis; pharmacologic management of pelvic pain.

- Urodynamics: Live urodynamics studies; hands-on urodynamics instruction workshops; performing urodynamics through the life span.

The SUNA Foundation will host a raffle on March 1. Money raised will help the Foundation fund research projects related to urologic disease or treatment and award SUNA members with scholarships for advanced education or specialized training.

Continuing Education

The SUNA Annual Symposium will offer a total of 14 contact hours of continuing education in nursing. Additional contact hours will be given for the preconference workshops and sponsored symposia.

SUNA is an approved provider of continuing nursing education (CNE) by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC-COA).

Registration

Complete conference information and online registration information are available on SUNA’s Web site, [url]http://www.suna.org[/url].
Society of Urologic Nurses and Associates

(Reposted from the ICN Forum)

I was so saddened to learn that Benazir Bhutto, the former Prime Minister of Pakistan was assassinated this morning. As a woman, she was a role model for all women living in the middle east. She proved, much to the consternation of misogynist Islamic extremists, that women are smart, capable and fully qualified to lead ANY country, including the USA.

That she was killed rather than be allowed to, in all likelihood, win the Pakistan election early next month proves just how vulnerable women are throughout much of the world. Women are devalued. Women are considered property. Women are rarely allowed to go to school or become a professional. We are, in the viewpoint of extremist Islamists, simply slaves or, better yet, the new face of the suicide bomber.

It’s ironic that in my work with interstitial cystitis, this point is driven home day after day after day. I talk with women in the USA who:

#1 - Don’t believe that they should or could ask their doctors questions.
#2 - Who don’t ask for help when they need it for fear of reprisal by our medical system and/or family members.
#3 - Who have barely been educated or seek to educate themselves. Some honestly don’t know the difference between their urethra and their vagina. Worse, ask them what treatments they’ve had and they say “I don’t know. I just let the doctor do whatever he wants.”

Come on ladies!!!!! If we don’t stand up and fight. If we don’t prove, through our daily actions, that women are capable, smart and determined…. we will slowly but surely lose yet more of our collective rights in the world. Do you realize that a woman with IC in the middle east often aren’t allowed to be treated?? It’s appalling!!!!

Please stand with me…. grieve for Benazir Bhutto and what she could have done for women in the middle east. We must fight extremism whereever and whenever we can.

Jill