Not everyone with IC experiences the same condition. Symptoms vary. The way they manifest is different. Some people respond to certain medications while others don’t.
This led researchers to propose several different types of systems to break IC into sub-categories called ‘phenotypes’. The entire point of a phenotype is it needs to be 1) easily identifiable and 2) able to guide your treatment options.
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Early attempts to phenotype IC failed these criteria. There remain other proposed phenotyping systems out there but they remain unproven, and frankly unhelpful and confusing.
In it’s most recent IC Guidelines, the American Urological Association (AUA) simplified this into three distinct IC sub-types:
Hunner’s Lesions: These are patients with discernable damage (Hunner’s lesions) to the bladder lining. This represents less than 10% of all people diagnosed with IC. If you’ve had a cystoscopy and they did not find Hunner’s lesions (even if they said it was ‘a little red’ or ‘angry’), you don’t have this subtype.
Pelvic Floor: These are people with pelvic floor dysfunction either contributing to or driving their symptoms. This is found in 85-90% of people diagnosed with IC, so is by far the most common and likely issue. Pelvic floor dysfunction can be diagnosed with a pelvic floor examination by a pelvic floor physical therapist (not necessarily your urologist or OB-GYN).
Widespread Pain / Central Sensitization: This sub-type occurs when the condition has been going on long enough to cause the nervous system to go into ‘overdrive’ and turn up the volume. This phenotype is characterized by symptoms of IC plus pain outside the pelvis, sensitivity to light, tough, or pressure, a history of anxiety, depression, trauma or PTSD and other associated issues.
Of the phenotypes there is a lot of overlap in how they should be treated. Pelvic floor physical therapy should be recommended for all different phenotypes. Those with Hunner’s lesions need to have those medically managed, and those with central sensitization need to both stop the pain signals from the pelvis (through pelvic floor physical therapy) and also work to relax the upregulated nervous system causing additional issues through the body.
Remember to focus less on the label and more on finding the practitioner(s) who can help you find relief!
As Nicole said in the full 'sode of the podcast on this topic...
" Of the phenotypes there is a lot of overlap in how they should be treated. Pelvic floor physical therapy should be recommended for all 3 phenotypes, with different medical management for Hunner’s lesions and more focus on the nervous system upregulation in those with central sensitization." -Nicole Cozean, Pelvic Sanity
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Who are we at PelvicSanity?
At PelvicSanity, it's our mission to support patients with pelvic pain and pelvic floor symptoms, regardless of where you live. We can help with:
- In-person treatment for those in Southern California at the PelvicSanity clinic
- Immersive Out-of-Town program for those able to travel
- Remote Consultations to get you expert 1:1 help, advice and an action plan
- Online patient courses on Interstitial Cystitis and Movement for Pelvic Health
- A Facebook support group for patients called Finding Pelvic Sanity.
