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 no 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.

Ulcerative Vs. Nonulcerative

Clinicians around the world agree that the two 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.

AUA 3 Subtypes of IC/BPS

In 2022, the American Urological Association released new, updated guidelines for IC/BPS in which they clearly state that IC is NOT a bladder disease, but rather a neuromuscular disorder in the majority of patients. They identified three unique groups:

  1. Bladder Centric – These patients have a clear dysfunction of the bladder wall, as demonstrated by the presence of Hunner’s Lesions, chronic UTI or Genitourinary Syndrome of Menopause.
  2. Pelvic Floor – These patients have demonstrated hypertonicity (aka tension) of their bladder wall and should immediately be referred for proper pelvic floor physical therapy
  3. Chronic Overlapping Pain Conditions – These patients struggle with multiple pain conditions such as: IC, IBS, vulvodynia, fibromyalgia, migraines, TMJ, etc. Research strongly suggests that the central nervous system is dysfunctional (aka maladaptive) and driving nerve sensitivity throughout the body. Therapies focus on calming the central nervous system.

While we were delighted to finally see this change, it was Dr. Christopher Payne’s five point system released in 2015 that first helped both patients and practitioners differentiate between the many potential causes of bladder pain, which we continue to use today. The AUA system is not as specific as the Payne system.

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(1).

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 (10% of the patient population) have inflammatory lesions visible on their bladder wall. In much of the world, only patients with Hunner’s lesions are diagnosed with “interstitial cystitis.” Patients without lesions are diagnosed with “bladder pain syndrome.” Hunner’s lesions require local lesion directed therapy (laser, fulguration, steroid injections) and do not generally respond to oral medications and bladder instillations. A new medical device currently under study, LiRIS (aka LiNKA) is the first treatment in history that has healed and/or reduced the size of lesions in just a two week treatment period.
  2. BPS: Bladder Wall Phenotype – Patient symptoms often start with a UTI, chemotherapy, chemical exposure or other bladder insult (i.e. drinking excessive amounts of soda, coffee, etc.). Frequency and urgency can occur throughout the day and night. Estrogen atrophy can also influence bladder wall function and sensitivity. Pain increases as the bladder fills with urine and is reduced on emptying. These patients usually find that their pain decreases when an anesthetic (lidocaine) is instilled into the bladder. Treatment priority focuses on calming and soothing the bladder wall, diet modification, OTC supplements, oral medications and other bladder directed therapies.
  3. BPS: Myofascial Pain Phenotype – These patients often have a history of sports, orthopedic injuries or childbirth trauma. Upon examination, 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. Treatment priority is pelvic floor physical therapy.
  4. BPS: Neuralgia Phenotype – These patients can have pelvic floor muscle tension or other causes of pudendal nerve compression. This causes severe burning or electric pain when sitting, “sensory abnormalities in the pudendal distribution” and a positive Tinel’s sign (tingling or pins and needles when the nerve is tapped gently). Pain is not typically linked to bladder function. Treatment starts with identifying causes of injury/irritation, physical therapy and stretching for tight muscles and analgesics specific for neuropathic pain. Nerve blocks can be both diagnostic and therapeutic when conservative measures fail. Surgical nerve release is infrequently needed but can be effective in carefully selected patients.
  5. Chronic Overlapping Pain Disorders/ Central Sensitization – These patients have multiple pain disorders (i.e. IBS, vulvodynia, fibromyalgia, 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.” These patients demonstrate clear signs of nerve sensitization throughout their body, including: extremely sensitive skin, diet sensitivity, drug sensitivity, chemical sensitivity and even visual sensitivity. Most also have an extremely sensitive sense of smell. Treatment priorities focus on calming the “wound up” nerves throughout the body. Treating all pain generators to reduce the overall volume of pain in the nervous system is important. Patients are also encouraged to try Mind-Body therapies that help “wind down” the nervous system, including: progressive relaxation, mindfulness, and, most importantly, anxiety management. Untreated anxiety and catastrophizing actively “winds up” the nervous system and contributes to even greater levels of pain. At no point is anyone suggestion that this is a mental. Rather, it is a nerve and/or nervous system that has been traumatized. The goal of therapy is to restore proper nerve function by reducing painful stimulation and stress.

Based on the video and text above, what is your subtype?

My subtype includes:

  • Central Sensitization – 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 am very sensitive to chemicals and scents, thus have removed all harsh chemicals, scented candles and other scented products (i.e. Fabreze) from my home.  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. I believe that an anxiety management class that I took in my 30’s, as well as a dedication to looking at the positive things in life, is the reason why my nervous system has calmed and I am mostly symptom free today.  When I start to feel skin sensitivity, I use palmitoylethanolamide (aka PEAORA®) to calm my nerves.
  • Myofascial/ 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 c