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 constantly spasming if I sit too long. I also have scoliosis which has led to a hip imbalance and SI joint dysfunction also on my left side. 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. I am also post menopausal and beginning to struggle with estrogen depletion and atrophy, particularly in my urethra. Treatment – I use a compounded preservative free estrogen cream to keep my skin “down there” as healthy and moist as possible. I protect my bladder by avoiding the worst irritants (caffeine soda), drink water throughout the day to keep my urine dilute and less irritating and, if necessary, use some of the OTC supplements to help fight flares.
Dr. Payne’s 2017 Presentation On His Five Point System: “The Emperor has no clothes.”
Hear from Dr. Payne why he created this system, what motivated him and how each subtype can be treated. This is an excellent presentation particularly for medical care providers and nursing staff.
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. (2) 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.
UPOINT has been remarkably helpful when assessing the chronic prostatitis population however for IC, it has key limits because most IC patients have some degree of bladder symptoms and bladder wall dysfunction. Original co-author Dan Shoskes and colleagues have adapted these guidelines to create a new system for use specifically with IC, called INPUT(3). This asks physicians to assess five distinct areas:
- I – Is any infection present?
- N – Does the patient also have any other neurologic or systemic conditions
- P – Does the patient have any anxiety / depression or other psychosocial issues?
- U – Does the patient have Hunner’s ulcers (now known as lesions)
- T – Does the patient have tight or dysfunctional pelvic floor muscles.
They tested this system with 239 men and women. The incidence of domains was Infection 11%, Neurologic/Systemic 51%, Psychosocial 81%, Ulcers 18% and Tenderness 85%. Patients had, on average, 2.46 domains and 65% had 2 or 3 positive domains. Only 5% had none. The greater the number of domains, the great the symptoms. Hunners lesions increased symptom scores. The conclude that the INPUT system replicates the validity and clinical utility of the UPOINT system. They also believe that patients may benefit from multimodal therapy up front for each extra domain rather than relying on the sequential tiered approach found in the AUA Guidelines.