IC Subtypes & Phenotypes
Spend anytime in an IC support group and you learn, very quickly, that patients are often very different. Some patients struggle high levels of pain while others have only frequency or urgency. Some have bladders that are profoundly wounded and bleeding while others have normal, healthy bladder walls. Tight, dysfunctional pelvic floor muscles are found in many but not all patients. A smaller group of patients struggle with of related conditions to IC (irritable bowel syndrome, vulvodynia, prostatodynia, fibromyalgia) while others have none other health problems. Clearly, there are distinct variations (subtypes, phenotypes), in the IC patient community and a “one treatment fits all” approach is inappropriate and ineffective.
For the past eight years, urologists and researchers around the world have tried to define “subtypes” or “phenotypes” to direct patients to the best treatment for their unique case for IC. The first and most obvious subtypes are:
- Hunner’s Lesions – Roughly 5 to 10% of patients have Hunner’s lesions on their bladder wall. This is known as “classic IC.”
- Non-Ulcerative – The remaining 90% of patients often have a normal bladder yet struggle with often profound symptoms.
But this doesn’t help patients and/or doctors select the best treatments unless, of course, they have Hunner’s lesions. What about the remaining 90%? Clearly, they aren’t all identical. Researchers have been working for years to create a more accurate subtyping system.
Released in 2009, the second proposed subtyping system was the UPOINT System for the Clinical Phenotyping of Chronic Pelvic Pain by Nickel, Shoskes and Rackley. (1) They asked physicians to look at and beyond the bladder in six different areas, including:
- what bladder symptoms are present?
- what’s the condition of the bladder (i.e. Hunner’s lesions)?
- does the patient have other related conditions (i.e. IBS)?
- what is the health of the pelvic floor muscles?
- does the patient struggle with anxiety / depression?
- has any infection been found?
Based upon the answers to these questions, doctors could then create a custom treatment plan for each patient. This “whole body” approach has been validated in multiple research studies and serves as the foundation for the Canada Urology Associations Guidelines For IC/BPS that were released in 2016.
Five Subtypes of IC
In 2015, Dr. Christopher Payne argued that the diagnosis of IC should be much more specific so that a clear treatment pathway can be identified. He suggested five subtypes of IC that assess the whole patient and produces a customized treatment plan(2).
We use this system in our patient coaching sessions. Be warned, many if not most urologists aren’t aware of any of the subtyping systems.
#1 – IC: Hunner’s lesions – This small subset of patients (5-10% of the patient population) have deep, inflammatory lesions on their bladder wall. In Europe, only patients with Hunner’s lesions are diagnosed with “interstitial cystitis.” Patients without lesions are diagnosed with bladder pain syndrome. Hunner’s lesions require very specific treatments and do not generally respond to oral medications and bladder instillations.
#2 – BPS: Bladder Wall Phenotype – Patient symptoms often start with a UTI or other bladder insult. Frequency and urgency can occur throughout the day and night. Pain increases as the bladder fills with urine and is reduced on empty- ing. These patients usually find that their pain decreases when an anes- thetic, aka lidocaine, is instilled into the bladder.
#3 – BPS: Pelvic Floor / Myofascial Pain Phenotype – These patients often have a history of sports or orthopedic injuries. Upon exami- nation, they have pelvic floor tension and the presence of trigger points in their pelvis, abdomen, back and hips that trigger severe symptoms when touched. They may have less diet sensitivity, normal or larger voids, may sleep more comfortably when their muscles are relaxed. Bladder instillation of lidocaine is NOT generally helpful.
#4 – BPS: Pudendal Neuralgia – These patients have muscle tension found in the pelvic floor phenotype above that is squeezing or pressing on nerves. This causes severe pain when sitting, “sensory abnormalities in the pudendal distribution” and a posi- tive Tinel’s sign (tingling or pins and needles when the nerve is tapped gently).
#5 – Multiple Pain Disorders/ Functional Somatic Syndrome – These patients have multiple pain disorders (i.e. IBS, vulvodynia, etc.). Dr. Payne wrote “Their prognosis is inherently different and the invasive treatments that may be appropriate for pelvic pain phenotypes could actually make things worse…Clinicians should proceed much more cautiously.”
Based on the video and text above, what is your subtype?
My subtype includes:
- Functional somatic syndrome – primary. I live with nerve sensitivity on a daily basis. I have had IBS, vulvodynia, gastritis and gastroparesis. I have very sensitive skin. I’m drug sensitive and usually have to take pediatric doses to minimize side effects. I’m food sensitive. There are some foods that just don’t work well in my gut. I have a wicked sense of smell and certain smells cause discomfort. I’m also quite chemically sensitive. Treatment – My daily goal is to keep my nervous system calm. I live a very quiet life in the country rather than the city, which I find very overstimulating. I avoid caffeine and any products that turn nerves on. I practice really good stress and anxiety management.
- Pelvic floor syndrome – primary. As a long-time athlete, it’s not surprising that my pelvic floor muscles are dysfunctional. I’ve torn my left piriformis muscle atleast twice, which is now scarred and constantly spasming if I sit too long. Treatment – I have no choice. I have to work on my pelvic floor muscles daily to keep them from getting tight, especially if I sit for long periods of time writing and working. I do my stretches and exercises every day to keep these muscles calm and collected.
- Bladder Wall – Secondary I no longer struggle with daily bladder symptoms because my bladder has had time to calm and heal. But, I do understand that my bladder was, at one point, badly injured and traumatized and, as a result, it can be sensitive. Thus, I protect my bladder by following the IC diet and, if necessary, use some of the OTC supplements to help fight flares. Granted, when my IC first began, I was bladder wall primary and had terrible bladder symptoms for years that required more aggressive treatment. I, and countless other patients, are living proof that healing can happen.
Author – Jill Osborne MA
Created – January 16, 2017