October 2007 - ICN E-Newsletter - Volume 7, Number 5
Read This Newsletter On The Web

(Our newsletter is an opt-in/opt-out newsletter that you are receiving because you signed up for it on our website or buy purchasing an ICN subscription. Our mailing service, Constant Contact, makes unsubscribing very easy! Just follow the instructions at the bottom of this email to make any changes. Your privacy is our priority. We have never sold our list nor do we send out spam. Any questions about your subscriptions can be sent to: newsletter@ic-network.com)

In this issue:

1. October 31st is IC Awareness Day!
2. Federal IC Research Takes a Dramatic New Direction
3. P.U.R.E. H.O.P.E - A New National Pelvic Pain Patient Association
4. The Latest IC Research News
5. IC Research Centers Worth A Dollar Or Two
6. Consumer Awareness - Shame on the Medical Device Industry, Ketamine
7. Clinical Trial Announcements - Canadian Trial of Uracyst
8. IC Lifestyles by Gaye Sandler - Bio-Identical Hormones: An Alternative Choice for Hormone Replacement Therapy
9. Self Help Tip of the Month - Are IC acronyms driving you batty?
10. IC Support Opportunities - New Groups in Saginaw MI, Dekalb IL, Brooklyn NY, Marion OH, Winchester VA
11. The ICN Shop & Mail Order Center

1. October 31, 2007 is IC Awareness Day!

The National Association of Nurse Practitioners in Women’s Health (NPWH), together with Ortho Women’s Health & Urology, has designated October 31st as the first annual National Interstitial Cystitis (IC) Awareness Day to raise recognition of the emotional and physical toll of IC, and provide education, support and important resources for this condition.

They invite you to visit www.AllAboutIC.com on October 31 to read inspiring patient testimonials and view the many faces of women with IC. You will also find disease information, locate an IC healthcare professional, see full results from the "Unmasking the Many Faces of IC" patient survey and link to a new patient brochure by NPWH.

2. Federal IC Research Takes A Dramatic New Direction

Is IC/PBS just a bladder condition???
Is prostatitis just a prostate condition???
Why do IC patients struggle with irritable bowel syndrome?

In a move which has many IC patients saying "It's about time!," the National Institutes of Health (NIH) has launched a new research network to help uncover the genetic, biological and behavioral relationships between these conditions.

This is a remarkable change of direction for the IC research movement. In past years, the NIH and other funding groups inexplicably "clung" the concept of IC as only a bladder disease despite significant new findings that showed that other conditions could be (and probably are) involved.

Many of the new discussions in the IC research movement are focusing on the concept of neuroinflammation and neurosensitization. It may be that once our body has sustained an injury, perhaps to any organ, it may create a cascade like effect of neurosensitization in nearby organs. IBS and IC, for example, both involve neurosensitization of the nerves in those organs and, in both cases, treatments are focused on reducing stimulation. This could explain why coffee, a well known neurostimulatory agent, exacerbates both IC and IBS. This new study will help determine the relationships, if any, between these conditions including the role of neurosensitization. The new Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network will receive up to $7.5 million dollars a year.

3. New National Pelvic Pain Association

When the Board of Directors of IC United (now P.U.R.E. H.O.P.E) decided to expand their scope and become a national organization, we were thrilled. P.U.R.E. H.O.P.E. is dedicated not only to IC but also the wide range of pelvic pain disorders, including: vulvodynia, vulvar vestibuitis, pelvic floor dysfunction, pudendal neuropathy and endometriosis. Led by President Cindy Sinclair, the organization still runs IC support groups in the Texas area. Their passion, though, are patient education events! Stay tuned to the ICN for more event details!

4. The Latest Research Studies

A. IC Patients Found To Have More Hysterectomies & Pelvic Surgeries
William Beaumont hospital continues to offer superb new research studies on IC and common patient experiences. In this latest study, Beaumont researchers determined that women with IC had a statistically higher prevalence of hysterectomies (42.3% vs. 21.4% of controls), bladder suspensions (21.9% vs. 5.7%), pelvic or genital surgeries other than cystoscopy (26.5% vs. 16.2%), and laparoscopic pelvic surgeries (22.8% vs. 8.3%). Women with IC more commonly had been diagnosed with endometriosis and fibroids.

Numerous IC patients have reported having hysterectomies prior to their correct diagnosis of IC, often at very young age. This study found that of women with IC who had hysterectomies, 68% of the hysterectomies were done before their diagnosis of IC, and only 21% were done after their IC diagnosis. The diagnosis of IC occurred 1-5 years after hysterectomy in most cases. The researchers concluded that "the majority of these surgeries were done before the diagnosis of IC and may be performed for pain related to undiagnosed IC" proving, yet again, that better diagnostic methods for pelvic pain are needed!

Source: Ingber MS, et al. Dilemmas in Diagnosing Pelvic Pain: Multiple Pelvic Surgeries Common in Women with Interstitial Cystitis. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Sep 18

B. Is Overactive Bladder A Hypersensitization Disorder??
When the term "overactive bladder (OAB)" first started appearing on TV in those "Gotta Go, Gotta Go Right Now" ads, many of us were puzzled. OAB wasn't considered a real disease back then. OAB was a marketing term created by a PR company. It was a way of saying "this patient has incontinence" without using the term incontinence on TV. It was a prettier name. Well, as time went on, that million dollar marketing campaign changed the face of urology as more and more patients were diagnosed with OAB and more drug companies jumped on the bandwagon with new potential medications. Before we knew it, OAB became a household term. Yet, there remains significant controversy and opinions vary. Some doctors believe that it's a real condition characterized by urgency. Others believe that OAB patients are likely mild IC patients.

Researchers in Japan conducted a study of 21 OAB patients and their urination patterns as compared to controls. They determined that sensations of "urgency" increased as bladder volume increased but that, in the OAB patients, urge sensation was dramatically increased at ANY bladder volume. They hypothesize that OAB may be more accurately defined as a hypersensitivity disorder which, given the trend of looking at pelvic pain disorders as neurosensitization disorders, makes sense. Perhaps this could be the more accurate name for IC/OAB/PBS/BPS. Could they all be neurosensitization disorders??

Source: Osamu Yamaguchi et al. Defining Overactive Bladder as Hypersensitivity Neurourol. Urodynam. October 2007; 26(S6):904-907

C. Interstitial Cystitis/Painful Bladder Syndrome: Appropriate Diagnosis and Management
Dr. Jeffrey Dell has written a comprehensive article for the Journal of Women's Health about the similarities between IC and urinary tract infection. Read it on the web!

D. Tamm-Horsfall Protein May Play Larger Role in IC Than Expected
IC researcher C. Lowell Parsons (UCSD) may be on to something big. The Tamm-Horsfall protein plays an important, protective role in the bladder wall. It helps prevent the irritating substances found in urine from injuring the bladder wall. But, the Tamm-Horsfall protein is qualitatively different in patients with interstitial cystitis compared to controls and may not be protecting our bladder as well. They conclude that an altered Tamm-Horsfall protein may be involved in the pathogenesis of interstitial cystitis. It may also lead to new diagnostic methods. Very interesting indeed!

Source: Parsons CL, et al. Defective Tamm-Horsfall Protein in Patients With IC. J Urol. 2007 Oct 16;

Our Sponsors Support This Free E-Newsletter! We Thank Them for their support!
Cystoprotek	CystaQ	Lo-Fric Catheter	Prelief	Bladder Q

E. Hydrodistension and Intravesical Instillation of Hyaluronic Acid May Help Severe IC Patients.
This study caught our attention because the initial data suggests that it may have helped heal the ulceration and inflammation found in severe cases of IC. Twenty-three patients who had not responded to other therapies participated. All underwent general anaesthetic cystoscopy, hydrodistension and instillation of hyaluronic acid (40 mg/50 ml). Two initial treatments were carried out a month apart and duration between treatments increased depending upon symptom response. Seventeen patients (74%) responded with immediate improvement in symptoms. In all responders, healing of ulceration and resolution of inflammation occurred. Average anaesthetic bladder capacity increased in the responder group from an average of 492 ml (median 500 ml) to an average of 776 ml (median 700 ml). The researchers suggested that "sequential hydrodistension and hyaluronic acid treatment under general anaesthesia may be considered for resistant cases of interstitial cystitis, especially those that cannot tolerate the instillation procedure under local anaesthesia." They further emphasize that further research & trials must be performed.

Source: Ahmad I, Sarath Krishna N, Meddings RN Sequential Hydrodistension and Intravesical Instillation of Hyaluronic Acid Under General Anaesthesia for Treatment of Refractory Interstitial Cystitis: a Pilot Study. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Sep 14

F. Diagnostic Criteria, Classification, and Nomenclature for Painful Bladder Syndrome/Interstitial Cystitis: An ESSIC Proposal
As we reported one year ago, the European Society for the Study of IC (ESSIC) has proposed sweeping new changes in the way that IC should be diagnosed. They also strongly recommend changing the name to bladder pain syndrome. Well, recommend isn't exactly the right word. They have announced that they will NO LONGER use the name interstitial cystitis except during a "transition period." What saddens us in the ICN office is that ESSIC claims that this was an international collaborative process when, in fact, the criteria they've developed is really only applicable in countries with managed health care (i.e. Europe). American doctors and all international patient groups were aggressively against this proposal because it simply is not implementable in our health care system. Doctors from less advanced countries have no chance of performing the extensive testing required by the ESSIC criteria. The most powerful argument is cost. Insurance companies will not pay for multiple biopsies when other, far less expensive, diagnostic methods are available. It's ironic that this month the NIH began using yet another new term "Urologic Chronic Pelvic Pain Syndromes" in their latest research proposal for IC. Perhaps that's the best possible solution.

Source: Diagnostic Criteria, Classification, and Nomenclature for Painful Bladder Syndrome/Interstitial Cystitis: An ESSIC Proposal European Urology, 20 September 2007

G. BCG Data Continues To Be Discouraging
One of the treatments that generated excitement several years ago was the use of bacillus calmette guerin (BCG), which is far more commonly used for bladder cancer. While one research center showed positive results, numerous studies performed since then have shown little effectiveness. In this latest sudy, the results of the national ICCTG study of BCG showed low response rates. The investigators concluded that "BCG should not be routinely used to treat IC."

Source: Propert KJ, et al. Interstitial Cystitis Clinical Trials Group Did Patients With IC Who Failed to Respond to Initial Treatment With BCG or Placebo in a Randomized Clinical Trial Benefit From a Second Course of Open Label BCG? Journal of Urology. 178(3):886-890, September 2007

5. IC Research Centers Worth A Dollar Or Two

Anyone who is familiar with non-profit fundraising strategies knows that the holiday season is the prime time to send out letters asking for donations. You might receive letters telling poignant, emotional stories of IC patients or pleas for support. It's the research centers, though, who rarely publicize their needs that, we believe, can use a dollar or two if you're making some donations this year, including:

• William Beaumont Hospital, Royal Oak MI (Dr. Ken Peters & colleagues)
• University of Maryland IC Research Center, Baltimore MD (Dr. Susan Keay, Dr. Jack Warren)
• The Urologic Research & Education Foundation, San Diego CA (Dr. Lowell Parsons)

If you want your donor dollar to be used directly for IC research, these medical centers are some of the most prolific in the country. Their IC research is cutting edge and helping to solve the many mysteries of IC. For contact information, and an idea of what they do, please visit the ICN Donation & Giving Guide.

6. Consumer Alerts

Shame on the Medical Device Industry
Imagine having an implant done for your bladder symptoms. You’re told “You’ll need constant medical care.” You’re told “The Device will need to be adjusted occasionally.” And then your finances became so challenged that you’re forced to go on Medicaid or lose your insurance entirely. Can you still receive care?? Apparently not if you’ve received Interstim, you live in Florida and are on Medicaid.

One IC patient has tried contacting dozens of doctors to find atleast one who would adjust her Interstim device and they’ve all said that they don’t take her insurance. She called the company's Patient Assistance Line and was told that it was her responsibility to find a doctor who would work with her insurance. Well, what is she supposed to do if NO doctors in the state who work with Interstim take Medicaid? So far, every doctor she’s contacted on the Medtronic list has said “No”… though she still has a few more to contact.

If you were a candidate considering Interstim and were told “If you ever lose your job and your forced to go on Medicaid … no doctor will maintain your device?” would you have it done?? Doesn’t the manufacturer have some responsibility in maintaining a diverse list of physician providers that will serve not only rich patients but also the poor??? God forbid a patient lose their insurance entirely. How can they possibly receive care for a device that requires constant care and monitoring. Clearly, this may be a serious lapse in medical device industry.

Young Ketamine Addicts Are Severe Bladder Ulcerations Similar to IC
Teens, young adults and adults who are ketamine addicts are at risk for developing a severely injured bladder. This was first brought to our attention in a research study presented at AUA in 2004 and last May by researchers in Toronto who followed the cases of nine ketamine addicts who used the drug daily. The addicts experienced symptoms of severe dysuria (painful or difficult urination), frequency, urgency, and gross hematuria (blood in their urine). Further testing revealed a dramatic thickening of their bladder walls, a small capacity, severe bladder inflammation and severe ulcers in their bladder. Clinicians in Hong Kong have recently published even more dramatic findings including a dramatic loss of bladder capacity and leakage. The good news, however, is that patients found some relief once they stopped the drug and used a typical IC treatment, Elmiron.

Sources:
(1) Peggy S. Chu, et. al ‘Streetketamine’–associated bladder dysfunction: a report of 10 cases Hong Kong Med J 2007;13:Epub 2007 Jun 2
(2) Shahani R, Streutker C, Dickson B, Stewart RJ. Ketamine-Associated Ulcerative Cystitis: A New Clinical Entity. Urology 2007;69:810-2

7. Clinical Trial & Research Announcements

Uracyst® Versus Placebo in Patients With IC/PBS
Watson Pharmeceuticals is beginning a new Canadian clinical trial studying the effectiveness of Uracyst® in the treatment of IC. Uracyst is Intravesical Sodium Chondroitin Sulfate. Study locations are in Ontario, BC and Nova Scotia. Read more about it!

8. IC Lifestyles by Gaye & Andrew Sandler

Gaye & Andrew Sandler have been involved in the IC movement for many years. In addition to authoring Patient to Patient: Managing IC & Related Conditions, they recently co-wrote the newest IC book Please Understand: The IC Guide For Partners. We're very happy to welcome them back with this new article on bioidentical hormones featuring an interview with Dr. Randy Birken of Balylor University, TX. This is a must read if you are currently considering hormone replacement therapy! Click here to read the full interview!

9. ICN Self Help Tip of the Month - Are IC acronyms driving you batty?

(By Jill Osborne, MA - ICN Founder)
When I first joined the IC movement back in 1993, we had only a few acronyms. IC stood for interstitial cystitis. Easy as pie. No confusion. Newly diagnosed patients today are probably VERY confused about the many acronyms used in this newsletter and on every IC website. BRBBB, when used in our IC support chats, usually means "Be Right Back.. Bathroom Break." So, I thought I'd take a shot at defining the most popular ones for you!

Common Names Referring To IC Like Symptoms
IC = Interstitial Cystitis
PBS = Painful Bladder Syndrome (proposed as a name change several years ago)
IC/PBS = A temporary term still in use that combined both conditions
BPS = Bladder Pain Syndrome (the proposed new name of IC)
BPS/IC = Proposed new acronym

Conditions Related to IC
OAB = Overactive Bladder
PFD = Pelvic Floor Dysfunction
PPS = Pelvic Pain Syndrome
IBS = Irritable Bowel Syndrome
SS = Sjogren's Syndrome
VV = Vulvar Vestibulitis
PNE - Pudendal Nerve Entrapment

Diagnostic Terms
KCL Test = Potassium Sensitivity Test
PUF Questionnaire = Pelvic Pain and Urgency/Frequency Patient Symptom Scale Survey
Cysto = Short for Cystoscopy
Hydro with Cysto = Hydrodistention with cystoscopy

Treatments
BCG = Bacillus Calmette Guerin - a bladder instillation which shows little effectiveness
RTX = Resinaferatoxin - a bladder instillation which is no longer used
DMSO = Dimethyl Sulfoxide - an older bladder instillation, FDA approved but popularity is waning.

Research Groups
NIH = National Institutes of Health
NIDDK = National Institute of Diabetes, Digestive and Kidney Diseases
ICCTG = IC Clinical Trials Group (an old group of federally funded researchers)
ICCRN = IC Clinical Research Network (another group of federally funded researchers)
CPCRN = Chronic Prostatitis Clinical Research Network (federally funded prostatitis research group)
MAPP = Multidisciplinary Approach to the Study of Chronic Pelvic Pain Research Network (the newest group)
UCCPN = Urologic Chronic Pelvic Pain Network (the newest group of federal researchers)

Patient Groups/Resources/Support Providers in USA
ICN = Interstitial Cystitis Network
ICA = Interstitial Cystitis Association
P.U.R.E. H.O.P.E. = Formerly IC United

Professional Organizations
AUA = American Urological Association (has largest conference of the year which covers IC)
SUNA = Society of Urologic Nurses
AUGS = American Urogynecology Society
ESSIC = European Society for the Study of IC
NPWH = National Association of Nurse Practitioners in Women’s Health
SUFU = Society of Urodynamics & Female Urology
SIIU = Society of Infections and Inflammation in Urology

Got more?? Comments?? Disagree with me?? Have a story to share??? E-mail me now at: jill@ic-network.com

Featured New Products

Aren't chapped lips and dry mouth frustrating? As most patients using amitryptiline (Elavil) can share, dry mouth can be a very VERY uncomfortable side effect of common IC treatments. But dry mouth can also have an unexpected consequence, an increased risk of cavities. Luckily, the Biotene and SuperLysine products can help. I've used all of these myself and believe that these are worth trying if you, too, are struggling with dry mouth! - Jill O.

10. Support Opportunities

On-Line Support Chats
The IC Network also offers live support group meetings in our chat room for patients who are too ill to attend local meetings. These chats are run by our dynamic team of support group leaders, Leslie, Kath & Linda!

2007 CHAT SUPPORT GROUP MEETING SCHEDULE
1st & 3rd Monday of the Month, 5PM PST to 7PM PST

Local & Community Support Groups
Search groups by state

Attention support group leaders!
(1) Please review your listing on our website and make sure that it is accurate. All support groups are welcome to be listed. Please let us know if we have missed any groups.
(2) Are you struggling to raise money for your group to handle mailings and phone bills?? You can distribute the best IC books and other items from the ICN Shop as an affiliate! We'll handle all the shipping and send you a donation for 5% of each sale! Please contact our office for more information!

11. The ICN Mail Order Division!

What's new in our shop?? This Fall, our focus is on soothing some of the daily discomforts that IC patients struggle with. Dry mouth is so common, especially when we 're taking prescriptions that cause dry mouth. Coincidentally, dry lips seem to be part of the bargain and dry lips seem to trigger those dreaded cold sores. Throw in an extra need for lubrication and, well, you get the picture!