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 even Lyme disease. Exposure to harsh chemicals (chemotherapy, ketamine and/or excessive consumption of coffee or soda) is a common cause of bladder irritation. Aging, hormones and genetics can also play a role.
Given the myriad ways that IC/BPS manifests in different patients, as well as the diversity of events that appear to trigger its onset, it’s no surprise that a one treatment fits all approach, much less a one cure fits all approach, does not work. There is hope.
Recent advances in the phenotyping of IC/BPS have revolutionized the care of patients around the world. Patients in Europe are given the most aggressive diagnostic workup, requiring hydrodistention. Based upon their symptoms and biopsy results, they are then classified into one of twelve different subtypes of bladder pain syndrome/interstitial cystitis. The Canadian Urological Association (CUA) encourages the use of a six-point system known as UPOINT/INPUT. The American Urological Association (AUA) has not, yet, recommended a specific system though several are being studied.
I use the system developed by Dr. Christopher Payne, former Director of Female Urology at Stanford University, in 2015. In his proposal, Dr. Payne complained that a diagnosis of IC often left both the patient and the clinician unsure of what treatments to pursue. He suggested that if the diagnosis was more specific and individualized, a clear and more effective treatment pathway would emerge.
Dr. Payne proposed five fundamental phenotypes: (1) Hunner’s lesions, (2) bladder wall driven symptoms, (3) pelvic floor driven symptoms, (4) pudendal neuralgia, and/or (5) central sensitization, each with their own treatment priorities. Within each category, some additional variants are recognized, such as genitourinary syndrome of menopause (GSM) or chronic infection in subtype 2. He also suggested that more variants could be identified in the future.
The Payne phenotyping system encourages a more thorough diagnostic workup, more effective treatment planning and provides better insight into the prevention and treatment of IC flares. It has played a significant role in my life and how I work with my clients in the Interstitial Cystitis Network office.
Using Dr. Payne’s system, my primary subtype is central sensitization. As a child, I have had very sensitive skin and could not tolerate bubble baths or wearing clothing that contained wool or had rough textures. My stomach began to rebel in elementary school. In junior high, my bladder became sensitive and I often couldn’t sit through an hour-long class without having to use the restroom.
I began to develop vulvodynia in high school which had my gynecologist claiming that I had “the most sensitive skin he had ever worked with.” Irritable bowel symptoms hit in my early 20s along with some very new food sensitivities to oatmeal and chocolate. I began noticing more intense smells and tastes. Harsh chemicals (i.e. oven cleaners, turpentine, wood solvents, petroleum products) had me running out of rooms and/or buildings. They “hurt.” I experienced sporadic migraines and TMJ. At the age of 32, bladder symptoms hit so severely that I couldn’t sleep or drive without severe pain and discomfort. My anxiety levels were off the charts.
Three key breakthroughs helped me make sense of my chaotic body. Researchers at the University of Maryland found that IC could run in families. That was interesting because my sister, mother, aunt, cousin, and grandmother each struggled with bladder symptoms and very sensitive skin. Then, researchers started floating the concept of central sensitization in patients with bladder symptoms who had what appeared to be normal, healthy bladder walls. They believed that the nervous system was the root of their bladder symptoms. One of the classic signs of central sensitization is a very sensitive sense of smell and sensitive skin. I came to realize that almost every medical condition that I’ve struggled with could be attributed to a sensitive nervous system and, more importantly, my genetics. It was never my fault.
We also understand what is driving some of this sensitivity. Small fiber polyneuropathy is found in over 60% of patients with chronic overlapping pain conditions. The smallest (in diameter) nerves in the body have been injured. Neuropathies are associated with several illnesses, including: diabetes, Lyme disease, shingles and other viral conditions. Vitamin B12 deficiency is a well-known cause and fits nicely into one theory that some patients may have inherited a vitamin B12 deficiency disorder (aka porphyria). Nerves can be damaged due to an excess of vitamin B6, heavy metal exposure, organophosphates and, sadly, some of the antibiotics (nitrofurantoin) that were often given years ago to patients with suspected UTI.
I have another complicating factor. I’m a redhead and it is well known that redheads struggle with more pain sensitivity. I can personally attest to the fact that it takes more anesthesia to numb us for dental work. Red hair occurs when both parents carry a mutation of the MC1R gene which also, surprisingly, affects pain processing in the brain. Redheads are more sensitive to certain kinds of pain. We often require more anesthesia for surgical procedures. Yes, we aren’t being dramatic. Research studies have proven that our nervous system is different.
I don’t view central sensitization as a disease but rather the landscape of my body. I am hard wired to be more sensitive and it is my responsibility to calm and soothe my nervous system through diet, stress management and various treatments as necessary. I respect the fact that my bladder, stomach, and bowel are easily irritated by certain foods. I choose not to drink caffeine because it overstimulates my nervous system. I know that when I’m under stress, my body is more reactive. I take the time to rest, relax, and practice good stress management skills. I am remarkably healthier today than I was 25 years ago.
My second and more painful subtype is pelvic floor driven. The year that my bladder symptoms began, I had broken my tailbone and developed a mild case of scoliosis. Because I was unable to sit through class, the teachers complained and I was eventually seen by a urologist who diagnosed me with a urethral stricture, a narrowing of the urethra. Back in the 1970’s, they forced the urethra open with a metal rod. (Yes, it is as awful as it sounds!) I had dozens of these dilations over the next few years but, in hindsight, I wonder why nobody asked “why is her urethra narrow?” I believe that my pelvic floor muscles, specifically the group of muscles known as the levator ani, were tight to compensate for my tailbone injury and/or scoliosis.
Hindsight has also helped me to see that what I thought were “bladder flares” in my 30’s, were usually pelvic floor muscle spasms. I was startled badly one day and felt like I was going to be leak some urine. For several hours, I deliberately clenched my pelvic floor muscles until I returned home. The result was a wicked, days long flare of frequency, urgency and pain. This proved to me that muscles could trigger the symptoms I had associated with the bladder for decades. Not surprisingly, pelvic floor physical therapy was far more successful at reducing my symptoms than years of bladder treatments.
Patients who contact my office are often surprised when I say that we no longer consider IC an incurable bladder disease. Rather, we think of it as a pelvic pain syndrome. Why? Because other structures in the pelvis are often involved. Now we know why bladder therapies don’t work for so many. And, as Dr. Payne wrote, some patients are indeed curable if they are given the correct treatment, especially those with pelvic floor dysfunction. But we can’t talk about effective treatments until we understand your anatomy. Are your muscles tight? Does your bladder wall have lesions? Are you suffering with any nerve driven symptoms, like sciatica, pins and needles or PGAD? Does anyone else in your family share some of your symptoms? Do you have other painful conditions?
The purpose of this book is to help you, the newly diagnosed and/or veteran IC patient, understand more about your unique case of IC and to help you focus on the most effective self-help strategies. You can’t find more qualified authors than Gaye and Andrew Sandler. In their first two books, Patient to Patient: Managing IC and Related Conditions (1998) and The Proactive Patient (2014) they offered a veritable bible of self-help strategies that have helped thousands of patients get through the day. They cover a diverse, important range of topics from managing diet and exploring treatments to the impact of hormones and aging on the bladder. A muscle and movement re-education practitioner, Gaye shares exercises to relax the pelvic floor muscles. Andrew offers insight as the husband of an IC patient. Together, they provide a tool kit to help couples maintain their intimacy and relationships.
It has been a privilege to contribute to the second edition of this book and to introduce Dr. Payne’s work. While there will, undoubtedly, be more phenotypes or subtypes proposed in the coming years, we finally have a system which makes sense of the chaos of life with IC. We can now more accurately diagnose patients and focus on more effective treatments.
There is hope for patients with IC/BPS. You are not alone. You did not cause your IC/BPS. It is not your fault nor are you damaged goods. Your IC could be the result of an injury or trauma to your pelvis rather than a disease process. Your job is to create an environment that will support healing of your bladder wall, your pelvic floor muscles and your nervous system.
Gaye, Andrew and I offer many tips that will help you through your journey with IC. And, of course, if you would like to talk with someone and/or read more, please come visit our website, the Interstitial Cystitis Network (www.ic-network.com). We welcome you!
Jill H. Osborne, M.A.
President and Founder
Interstitial Cystitis Network
@icnjill – Twitter, YouTube
Table of Contents
CHAPTER 1 – SUBTYPING IC/BPS
- BEYOND THE BLADDER
- PELVIC ANATOMY
- THE EUROPEAN SOCIETY FOR THE STUDY OF IC/BPS (ESSIC)
- DR. CHRISTOPHER PAYNE SYSTEM
- CONCLUSION 7
CHAPTER 2 – SYMPTOMS & DIAGNOSTIC METHODS
- WHAT’S IN A NAME?
- WHAT DOES AN IC/BPS BLADDER LOOK LIKE?
- CONFUSABLE CONDITIONS
CHAPTER 3 – TREATMENTS
- AUA GUIDELINES FOR IC/BPS
- STEP ONE: SELF-HELP
- STEP TWO: ORAL MEDICATIONS, BLADDER INSTILLATIONS & PHYSICAL THERAPY
- STEP THREE: HYDRODISTENTION & HUNNER’S LESION TREATMENT
- STEP FOUR: NEUROMODULATION AND BOTOX®
- STEP FIVE: CYCLOSPORINE
- STEP SIX: SURGERY
- TREATMENTS NO LONGER RECOMMENDED
- OTHER TREATMENT OPTIONS
- THE TREATMENT OF PAIN
CHAPTER 4 – RELATED CONDITIONS
- CHRONIC OVERLAPPING PAIN CONDITIONS
- PELVIC FLOOR DYSFUNCTION (PFD)
- PUDENDAL NEURALGIA (PN)
- IRRITABLE BOWEL SYNDROME (IBS)
- FIBROMYALGIA (FMS)
- CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS (CFS/ME)
- TEMPOROMANDIBULAR DISORDER (TMJD)
- MIGRAINE HEADACHES
- SJÖGREN’S SYNDROME (SS)
- CHRONIC PROSTATITIS/CHRONIC PELVIC PAIN SYNDROME (CP/CPPS)
- CHRONIC FUNGAL INFECTION
CHAPTER 5 – THE IC/BPS DIET
- FOOD LISTS
- ELIMINATION DIETS
- COPING WITH DIET CHANGES
- EATING ORGANIC
- FOOD GROUPS
- BASIC TIPS
- GLUTEN SENSITIVITY
- LEAKY GUT
- DIET AND FIBROMYALGIA (FMS)
- CHILDREN WITH IC/BPS AND IBS
CHAPTER 6 – ALTERNATIVE THERAPIES
- MYOFASCIAL THERAPIES
- CRANIOSACRAL TREATMENT\
- OSTEOPATHIC MANIPULATIVE MEDICINE
- ACUPUNCTURE & CHINESE MEDICINE
- MIND/BODY AND PAIN MANAGEMENT PROGRAMS
- RELAXATION AND VISUALIZATION EXERCISES
- POST-TRAUMATIC STRESS DISORDER
CHAPTER 7 – SELF-HELP
- MANAGING IC FLARES
- COMMON FLARE TRIGGERS
- BLADDER WALL FLARE RESCUE PLAN
- PELVIC FLOOR FLARE RESCUE PLAN
- SLEEP QUALITY
- EMOTIONAL SUPPORT
- TIPS TO MAKE LIFE EASIER
- DISABILITY INSURANCE
CHAPTER 8 – RECLAIMING COMFORT & FITNESS
- SITTING AND IC/BPS
- SUPPORT FOR STANDING AND WALKING
- COMFORT AND SUPPORT WHILE LYING DOWN
- BODY MECHANICS FOR IC/BPS
- YOGA & PILATES
- A DAILY ROUTINE OF STRETCHING & STRENGTHENING
CHAPTER 9 – DOCTORS, HOSPITALS & OTHER MEDICAL CONDITIONS
- WORKING WITH DOCTORS
- NEW MEDICATIONS
- SURGERIES AND HOSPITAL STAYS
- COPING WITH GENERAL CONDITIONS, ROUTINE EXAMS, AND PROCEDURES
CHAPTER 10 – CHEMICAL SENSITIVITIES & ENVIRONMENTAL ILLNESS
- MULTIPLE CHEMICAL SENSITIVITY (MCS)
- PERSONAL CARE PRODUCTS
- CLEANING UP YOUR HOME ENVIRONMENT
- THE WORK SPACE
- BUILDING OR REMODELING A TOXIC-FREE HOME
CHAPTER 11 – LIVING WITH IC/BPS: A PARTNER’S PERSPECTIVE
- LEARNING TO ACCEPT IC/BPS
- TAKING CONTROL
- DEALING WITH FEELINGS
- FAMILY DYNAMICS
- IMPROVING COMMUNICATION
- DEALING WITH OTHER PEOPLE
- PARTNER SUPPORT