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LATEST NEWS

March 2011

Treatment Registry Now Enrolling Women in Six States:  Arkansas, Colorado, Florida, Ohio, Maryland, Washington DC

NVA funded the creation of the first Vulvodynia Treatment Registry because
it is unacceptable for women not to have scientific information on which to base their treatment choices. We've now expanded the Registry project to seven enrollment sites in six states: Arkansas, Colorado, Florida, Ohio, Maryland and Washington DC.

In addition to generating vital data on which treatments are most effective for different vulvodynia subtypes, your participation will help Registry investigators identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies.

If you are between the ages of 20 and 45 and suffer from vulvodynia, you may be eligible to participate in this study. (We're also working to obtain a grant that will enable Registry providers to enroll women over age 45 starting this summer.) The study does not provide free medical care and treatment. Participation is voluntary, does not include any experimentation and will not change your treatment recommendation.

To read more about the Registry project, please visit NVA's web site.

To speak to a Registry coordinator about participating in the following states, contact:

Little Rock, Arkansas: Christina Hutchinson (501-686-6799, cmhutchison@uams.edu)

Los Angeles, California: Coming Soon

Denver, Colorado: Jill Zika (303-602-9069)

Orlando, Florida (2 sites): Lilia Portilla (407-303-2721, lilia.portilla@flhosp.org)

Baltimore, Maryland: Gwen Monroe (443-632-0200)

Akron, Ohio: Sara-Jane Salstrom (330-375-4293, salstros@summahealth.org)

Washington DC: Hillary Tolson (202-887-0568)

Health care providers who would like to obtain Registry flyers to distribute to their patients should contact Ms. Portilla.


April 2010

New Clinical Research Study Focuses on New Treatment Option for Hard-to-Diagnose Painful Bladder Syndrome

For patients with interstitial cystitis—a chronic painful bladder syndrome—A new clinical study seeks to examine the effectiveness of an investigational pain medicine in the hope of adding to the few treatment options currently available.

A clinical research study is being conducted for patients with Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS), a chronic bladder disorder characterized by intense pelvic pain, urinary frequency-urgency, and pain during sexual intimacy (www.PainfulBladderStudy.org). It is estimated that as many as 1.3 million people in the U.S. have been diagnosed with this disease and many more remain undiagnosed.

There can be various underlying reasons why many people are undiagnosed: First, public awareness about IC/PBS is very low. Second, IC/PBS can be hard to diagnose because its symptoms mimic those of other painful bladder conditions.

In women, the symptoms of chronic pelvic pain, urgency, and frequency may be misdiagnosed as a recurring urinary tract infection, overactive bladder or endometriosis. In men, the symptoms may mimic medical problems such as chronic nonbacterial prostatitis or benign prostatic hypertrophy (enlarged prostate). An accurate diagnosis of IC/PBS is most often confirmed after numerous medical tests have been conducted.

IC/PBS is more common in women than men, and is a disease with significant impact on daily activities such as shopping, household chores, sleep, job productivity, and an intimate relationship. Those affected by this condition try to cope with its chronic burning, piercing pain and other symptoms.

Clinical trials are the only way to bring new pain medicines to market for IC/PBS, and to achieve this, clinical trials need patients with IC/PBS to take part. For a limited time, leading medical centers around the country are participating in a clinical research study that will examine the safety and effectiveness of an investigational medicine for IC/PBS pain and other symptoms. The study is enrolling adults 18 years or older who meet specific study criteria such as a confirmed diagnosis of IC/PBS. Adults currently living with symptoms of severe bladder and pelvic pain, urinary frequency and urgency may also be eligible for the study. People meeting those criteria are encouraged to visit the study’s website (www.PainfulBladderStudy.org) and self screen online to see if they may qualify for study participation.

This pain study provides those with a confirmed IC/PBS diagnosis with close monitoring of their IC/PBS symptoms, ongoing medical evaluations (at no cost), and the opportunity to possibly advance a future medicine for IC/PBS pain. The study is 24 weeks long with a 2-8 week medical evaluation period. You will be required to have a cystoscopy if you have not had one within the last 2 years. Each day, study participants will carefully track their pain levels in a digital diary provided by the study doctor. The study also involves at least seven (7) office visits and three (3) check ups by phone. Patients diagnosed with IC/PBS and experiencing moderate to severe bladder and pelvic pain, urinary frequency and urgency, are encouraged to seek out this clinical research study by visiting website www.PainfulBladderStudy.org to obtain more information about taking part.

Contact: Lindsey Lewis, MediciGlobal Inc.
Phone: 484-674-6872


April 2010

UROPLASTY’S URGENT® PC SYSTEM TO BE FEATURED ON NATIONAL TELEVISION PROGRAM “THE DOCTORS”

MINNEAPOLIS, MN, April 8, 2010 – Uroplasty, Inc. (NYSE Amex: UPI), a medical device company developing, manufacturing and marketing innovative proprietary products to treat voiding dysfunctions, today announced that Monday, April 12, the company’s Urgent® PC Neuromodulation System is expected to be featured in a segment of the popular television program “The Doctors.”  Local listings and times, which vary, are available through the following link: http://bit.ly/UrgentPConTV


February 2010

Interstitial Cystitis: A Guide for Nutrition Educators (A Confident Choices® Book)

Announcing Interstitial Cystitis: A Guide for Nutrition Educators (Confident Choices® Book). New research estimates three to eight million people may suffer from a painful bladder condition, interstitial cystitis—also called IC. The great news is that dietary modifications can help relieve the symptoms of IC which include urgent, frequent, and painful urination. The book Interstitial Cystitis: A Guide for Nutrition Educators is the first publication of its kind, written for registered dietitians and nurses who provide diet counseling to bladder disease patients.

Auburn Hills, MI – February 20, 2010 – The research is beginning to reflect what interstitial cystitis (IC) patients have known for decades: Dietary modification is one of the most effective treatments for those who suffer from this painful and often life altering bladder condition. In order to spread the word, Julie Beyer, MA, RD, a dietitian and IC patient, has written Interstitial Cystitis: A Guide for Nutrition Educators to help educate dietitians and nurses who provide diet counseling to bladder disease patients.

The main symptoms of IC are frequent urination, an unexpected urge to get to a bathroom immediately, and pelvic pain. The pain may or may not be perceived as coming from the bladder. For unknown reasons, there is painful inflammation and sometimes ulcers in the bladder lining. Patients feel like they have a bladder infection all the time, but the urine does not show bacteria if cultured.

Treatments vary; however, dietary changes can make a huge difference in symptoms. “Much of what we know about diet and IC is based on what IC patients have told us,” said Beyer who has authored two other books on IC and diet, “For years, IC patients were insistently and consistently reporting that caffeinated beverages, tomato products, spicy foods, and acidic fruits increased their painful symptoms. Now, thanks to the work of Robert Moldwin, MD, and Barbara Shorter, PhD, RD, we have research to support what the patients have told us all along.”

In 2009, Beyer worked extensively with other IC and diet experts to standardize what is now known as the “Interstitial Cystitis Food List.” “We have the basic diet identified,” said Beyer, “However, the rest is dependent on a patient determining their personal trigger foods which can vary greatly from patient to patient. That is where nutrition educators come in!”

To encourage more dietitians to learn about IC and to aid those clinicians who are already helping IC patients, Beyer has written Interstitial Cystitis: A Guide for Nutrition Educators. In addition to addressing the basics of an IC diet, the book summarizes the epidemiology of IC, describes what a typical IC patient may be experiencing, and outlines the modified elimination diet process that has helped so many IC patients gain control of their symptoms.

“Not only is there a great opportunity here for nutrition educators to expand their practices,” said Beyer who has helped thousands of IC patients over the past 12 years, “it is tremendously rewarding to help a patient reclaim a life they thought they had lost!”

Interstitial Cystitis: A Guide for Nutrition Educators (ISBN: 978-0-9767246-6-7) will be available March 15, 2010 on Amazon.com and on the IC Diet website (www.ic-diet.com).

Julie Beyer, MA, RD, a Michigan dietitian and IC patient herself, wrote Interstitial Cystitis: A Guide for Nutrition Educators (A Confident Choices® Book), Confident Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder to help IC patients and clinicians understand how diet modification can change the lives of bladder disease patient like those with interstitial cystitis. Her website (www.ic-diet.com) provides information and resources for patients and medical educators. Beyer coaches IC patients on diet and lifestyle modification and is a popular speaker at IC Support Groups and conferences across the country.For Contact:Julie Beyer, MA, RDConfident Choices866-537-8766julieabeyerrd@aol.com http://www.ic-diet.com/http://www.you-can-write-a-book.com/

Physical Therapist, Lyne Ezenwa (Stewart) is now seeing patients at The Pelvic Health and Physical Therapy Center, 7900 Fannin, Suite 1200, Houston, TX 77054713-790-0600 www.pelvichealthcenter.com


January 2010

ENDING FEMALE PAIN, A WOMAN’S MANUAL BY ISA HERRERA, MSPT CSCS
The Ultimate Self-Help Guide for Women Suffering From Chronic Pelvic and Sexual Pain

 

Women who suffer needlessly from chronic pelvic pain, painful intercourse, and post-partum pain can find relief with this amazing, newly released resource.

 

Ending Female Pain, A Woman’s Manual instructs women on how to regain control over their pain and improve their quality of lifestyles by teaching them the trade secrets developed by physical therapist and author Isa Herrera.

 

Ending Female Pain provides the details women need to know to help them selves, presented by Herrera with honesty, accuracy, and simplicity.

 

Visit www.EndingFemalePain.com or www.Renew-PT.com for more information about Ending Female Pain, A Woman’s Manual.Contact information:Ms. Isa Herrera, MSPT, CSCS, email: info@endingFemalePain.com or call her office at 212-213-4660.


October 2009

NUCYNTA - A Different Kind of Pain Treatment

New Opiate Pain Medicine, Nucynta (tapentadol), is available.NUCYNTA™ is a single molecule with a different approach to pain relief. It is the first new molecule in analgesia in over 25 years for the relief of moderate to severe acute pain in patients 18 years of age or older. NUCYNTA™ works differently than other currently available opioids. It may be an appropriate choice for some patients.How does NUCYNTATM Works click here.


September 2009

New Fibromyalgia Drug – Savella® (milnacipran HCI)

New Opiate Pain Medicine, Nucynta (tapentadol), is available.In clinical studies, Savella helped relieve the symptoms of fibromyalgia. Some patients who experienced overall improvement with Savella also experienced overall pain reductions one week after they reached a stable dose.


P.U.R.E. H.O.P.E. ANNOUNCES ITS UPCOMING CONFERENCE:

5th Annual Pelvic Health Conference
February 20, 2010
Crowne Plaza at Greenpoint
Click Here for details!


P.U.R.E. H.O.P.E.  IN THE MEDIA

P.U.R.E. H.O.P.E. Medical Advisory Board Member, Dr. Christopher Jayne appeared on an episode of Great Day Houston on Thursday, November 20, 2008.  He was on a panel discussing “Sexual Health”.  Dr. Jayne appeared on the three segments.  

Segment #1

Segment #2

Segment #3


1ST IC & CHRONIC BLADDER PAIN MINI CONFERENCE IN SPRINGFIELD, MO
THURSDAY, NOVEMBER 13, 2008 12:30-3:30PM AT COX HOSPITAL -THE MEYER CENTER 3545 S. NATIONAL AVENUE, SPRINGFIELD, MO(Space is limited so PLEASE call in advance!)Guest Speaker: Odilia Egbers, Pelvic Pain Physical Therapist, will share the benefits of pelvic PT etc.
 • Please bring an IC safe snack to share. Meet other patients in Missouri and Arkansas.
 • Review many of the available books and materials for IC and chronic bladder pain.
 • Have the opportunity to help with a research study for IC patients.
For more information contact:Robin at 417-581-8965 or email at jrcvetter@aim.com orShelly at 417-255-1900 or email at Romans828@mozarks.com 


September 6, 2008

P.U.R.E. H.O.P.E. is excited to announce that all registered attendees for the 4th ANNUAL PELVIC HEALTH CONFERENCE, Saturday, January 24, 2009 are invited to attend

"Meet the Guest Speakers"
Friday, January 23, 2009
4:00 to 6:00 pm
Holiday Inn (near the Galleria)
Hospitality Suite, 3131 West Loop South, Houston, TX 77027

Meet and speak with Dr. Michael Pezzone and Dr. Theoharis Theoharides one-on-one. All attendees that attend the early registration receptions will also receive an additional ticket for the door-prize drawing to be held at the end of the conference on Saturday.

There are sure to be other surprises - you will not want to miss a minute!

Conference registration will also be accepted at the reception. Click here to register online using paypal or to request an invitation.

Meet the Guest Speakers Reception is sponsored by the Interstitial Cystitis Network and Alaven® (makers of Cystoprotek)


June 12, 2008
P.U.R.E. H.O.P.E. is excited to announce the first co-chairs of the medical advisory board.

Co-Chair: Peter M. Lotze, M.D., F.A.C.O.G.
Dr. Lotze is an Assistant Professor in the Department of Ob/Gyn, Division of Urogynecology for both Baylor College of Medicine and the University of Texas, Houston. He is the Co-Director for the Anatomy Lab for Resident Education at the University of Texas, Houston. He is also the director of the Fellowship Program in Urogynecology at Ob/Gyn Associates in Houston, TX. Dr. Lotze has published several articles in the area of urogynecology and remains actively engaged in research in pelvic health issues.

Co-Chair: Christopher P. Smith, M.D., M.B.A.
Dr. Smith is an Associate Professor in the Department of Urology at Baylor College of Medicine in Houston, TX. He is very active in research in urology as the Co-Director of the Neurourology Lab. He is a Specialist in Male and Female Incontinence and Voiding Dysfunction. He is an expert in the use of Botox® and InterStim® therapies, treatment of refractory overactive bladder, and chronic pelvic pain syndrome. Dr. Smith has published many articles and the recipient of many awards including Houston’s Top Doc 2008.


November 2007

P.U.R.E. H.O.P.E. is excited to announce their official non-profit status as a national organization as of November 5, 2007! 

Together, we will find hope to help deal with chronic pelvic pain issues.

Please come back to visit for the latest news and updates as our
organization grows with YOU! 



Disclaimer Statement:
All information on the P.U.R.E. H.O.P.E. Web site is provided with the understanding that the P.U.R.E. H.O.P.E. does not engage in the practice of medicine.  The members of P.U.R.E. H.O.P.E. cannot and do not give medical advice.  No information on this Web site should be considered medical advice.  Only your personal physician can do this for you.

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