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Where can I ask questions?
#1 – Your doctor is the only person qualified to give you medical advice. You should always address questions about treatments and your medical care to your physician.
#2 – You can ask basic questions about IC, self-help, diet and so forth in the ICN Support Forum where there are dozens of support group leaders and patients who would like to help. This is a free service!
#3 – You can e-mail or phone the ICN office directly. If you have numerous questions about IC and/or would like to talk in depth, you can arrange for a “Coaching Session”. The ICN has three coaches available including: Jill Osborne MA (on IC, Flares, Pelvic Pain) Julie Beyer RD (on Diet) and Heather Howard PhD (on Sexuality). Click here for more information on ICN Coaching Services
#4 – Read more in the best books on IC, available in the ICN Shop.
How can I find a doctor experienced with treating IC?
Finding a medical care provider to work with can be very difficult and it’s not unusual for patients to have seen five or more physicians before receiving a correct diagnosis. Why is it so hard? Put the blame on medical schools who simply don’t provide much education about these conditions. Throw in the fact that bladder and pelvic pain isn’t visible to the eye and it’s not surprising that many patients are given a prescription of antibiotics and then sent on their way.
As you begin your search, start with the ICN Professional Database first. These providers come with good reviews from patients. If you’re stuck with doctors in small towns, you’ll want to consider using a regional or national specialist. We share a list of the best specialists in the nation! Still no luck or if you’re struggling with something abut more specialized, check out the list of providers from other professional organizations, such as the International Pelvic Pain Society.
Want more natural approach? Fair warning. Many patients have gotten scammed by alternative providers who know little about IC and suggest hundreds of dollars of vitamins or supplements each month. You can’t assume that every provider knows what IC is. You must be skeptical, as well, of anyone suggesting that they can “cure” or “heal” pelvic pain disorders such as IC.
Please visit our Find A Provider section.
Who manages the IC Network?
The Interstitial Cystitis Network is managed by Jill Osborne MA with help by an exceptional team of ICN staff and volunteers, including:
Janice, Christina & Loni – Mail Order Division & Accounting
Donna – Manages the support forum and leads an exceptional team of volunteers who serve as forum moderators and super moderators.
Jill H. Osborne – Contributes the majority of written materials and articles for the website AND our magazine, the IC Optimist. She also works directly with medical care providers, IC researchers, clinical trial companies and/or pharmaceutical companies.
Julie Tapia/Tapia Studies (Santa Rosa, CA) designs our publications.
How is this site funded?
The ICN was born in 1993 and, for the first five years of its existence, Jill Osborne paid for all expenses. As the website and services expanded, it became clear that our model for online education and support was viable. We originally hoped to develop as a non-profit organization however a thorough fund development assessment found little in the way of grant money available. More importantly, our members were crystal clear. They did not want to belong to an organization that asked for money in every communication. As a non-profit, we would have been forced to do exactly that to survive. We chose a different direction. In May 1998, the ICN became a health education company in the State of California. In December 2004, it was incorporated and is now a division of J.H. Osborne, Inc.
The Interstitial Cystitis Network is supported by generous corporate sponsors, subscriptions for our quarterly IC Optimist magazine and from the proceeds of the ICN Shop!
How did IC activities first begin on the Internet?
In 1994, the support group leaders of IC-Redwood Empire (a California based IC support group) were looking for a method to bring support to members who could not come to meetings because of illness or work. Jill Osborne, founder of ICRE, joined both Compuserve and AOL to search for other patients. Shortly thereafter, she moderated the first ever on-line bladder disease support groups on AOL for IC patients, paraplegics, quadriplegics and prostate patients, exploring the effectiveness of on-line message boards and live support chats. One year later, another co-leader of ICRE (Nancy, aka Jewel), joined the AOL effort and began the first “IC only” message board in January of 1995. She and Jill jointly facilitated the first live meetings and message boards. Later that year, Jill stepped down as leader of the AOL group to begin the IC Network.
What is the goal of the IC Network?
The ICN is a “social advocacy” medical education company. Our goal is to provide valuable and timely information and support resource not only for patients, but for physicians and researchers who are working to further the IC cause.
Is the IC Network affiliated with the ICA?
The answer is “no.” When the ICN began in 1995, we offered to build the first website on IC for the ICA but they were not interested in any “on-line” activities at the time. They joined the on-line community in 1998 when they built their first website on IC.
Does the IC Network offer medical advice?
Absolutely not. Gathering health information on the web should be done with care. Always remember that no on-line information source should provide you with personal medical advice, nor should you assume that every website or patient offering information on IC is safe. In fact, many websites now sell fake “cures,” unreliable books and/or products, thus scamming gullible patients. Please remember that only YOUR personal medical care provider can do this.
What is the message of the ICN?
There is hope! Great hope! Current IC research is providing dramatic new developments in IC knowledge and treatment strategies. Every day, we get closer to the cure and, until that happens, there are very effective treatment and self-help strategies worth exploring. We hope to encourage patients to be actively involved in their medical care.
Who writes the IC Network materials?
The IC Networks work with IC researchers, physicians and professional medical writers to develop content for our website and newsletters.
Revised: June 9, 2014 – jhosborne