We are delighted to announce our newest book: IC 101: It’s Not Just A Bladder Disease. Recognizing that a “one treatment fits all approach” has failed millions, it introduces a new subtyping system that will help both newly diagnosed and veteran interstitial cystitis and bladder pain patients determine the actual cause of their symptoms. Patients who have had “normal” bladders for years will learn that structures outside of their bladder (muscles, nerves, bones and other organs) may be involved. Patients with visible bladder wall irritation (and lesions) will learn the many potential, and preventable, triggers for bladder wall irritation and dysfunction.
This book will give patients a road map to diagnosis and treatment based upon their own unique history and presentation of symptoms. For many, it can begin with a traumatic injury to the pelvis, such as a fall or tailbone injury. Hormones (birth control, menopause, etc.) can trigger bladder sensitivity. Chemical injury from chemotherapy, ketamine or a poor diet is common. Chronic fungal (candida) and viral infection is possible. Fibroid tumors, endometriosis, pelvic organ prolapse and pelvic congestion syndrome should be considered. For those patients who struggle with multiple pain conditions and anxiety disorder, the central nervous system is the likely culprit.
Co-author and IC Network founder Jill Heidi Osborne shared “I was thrilled to partner with Gaye and Andrew Sandler, authors of four previous books on IC, who brought decades of expertise and research to the project.” After starting IC support groups thousands of miles apart, Gaye and Jill knew that their multiple pain conditions were not mental or emotional. Now 25 years later, researchers have begun to connect the dots and it begins with a fundamental concept – that structures outside of the bladder may be responsible for their “IC” symptoms, including the central nervous system.
In her ground breaking book Patient to Patient: Managing IC and Related Conditions (2000), Gaye was the first author to write, in-depth, about the often extreme sensitivity that some patients struggle with. Andrew was the first spouse of an IC patient to share his unique journey of support and focuses on how to nurture relationships over time. Jill brought the latest IC and chronic pain research, including her focus on the very clear variations found in the IC patient community. She also includes new sections on chronic overlapping pain conditions, central sensitization, small fiber polyneuropathy, pain management, disability coverage and more.
IC 101: It’s Not Just A Bladder Disease is the first book that a newly diagnosed patient should read and will help them work with their doctors, prepare for appointments, ask effective questions, monitor their symptoms, track their progress and discuss pain care. It is full of self-help tips that may help ease discomfort and stress. Veteran patients not responding to therapy or getting worse over time should take a step back and revisit their diagnosis, as suggested by the American Urological Association. Was something missed? It’s not only possible, it’s probable for many these patients.
The title says it all. IC is not just a bladder disease. For many, it’s beyond the bladder and this opens many new doors for treatment and, for some, a possible cure.
Publisher: Interstitial Cystitis Network
How To Purchase
Available through the ICN Shop and Amazon (soon), in multiple formats.
Print version: $24.99 (spiral bound) – https://www.icnsales.com/ic-101-its-not-just-a-bladder-disease.html
PDF Version: $9.99 (e-book) – https://www.icnsales.com/ic-101-its-not-just-a-bladder-disease-pdf-e-file.html
Kindle & Audible coming soon!
Sample Chapter: INTRODUCTION
The dream of every patient diagnosed with interstitial cystitis/ bladder pain syndrome (IC/BPS) is to find a cure. We want a treatment that will eliminate our bladder symptoms and pain, allow us to eat foods or drinks that we’ve avoided for years, work comfortably, and, of course, enjoy intimacy again.
If you’ve had IC for more than a year, the odds are that you’ve tried a variety of treatments such as oral medications, bladder instillations, OTC supplements, neuromodulation, and perhaps even Botox® or cyclosporine. Yet, despite this wide variety of interventions, many of you are still struggling to find relief. As much as we would like to have one treatment that would heal most patients, it simply isn’t available and there’s an important reason why.
Visit any IC support group or online support forum and you’ll quickly see that not all patients are the same. Some have agonizing Hunner’s lesions on their bladder wall while others have a normal, healthy bladder (myself included). Some patients struggle with mild frequency and urgency, while others have intense pain. Some also struggle with other chronic pain conditions (i.e. IBS, vulvodynia, fibromyalgia, migraines, TMJ etc.), while others only have bladder symptoms. Despite their common diagnosis of interstitial cystitis or bladder pain syndrome, clearly these patients are not the same.
You can see even more diversity in the events which appear to trigger the onset of IC symptoms. Many women report that their symptoms began after delivering a baby while men often report that their symptoms began after riding motorcycles or bicycles. A history of athletics and/or pelvic traumas, repetitive falls, and/or tailbone injuries are common in both sexes (i.e. football, gymnastics, ice skating, dancing etc.). There is a cluster of men and women whose symptoms appear to begin after an infection, whether it be a simple UTI, an STD, or ev