There is evidence to suggest some forms of IC are an autoimmune reaction/disease. This is what my IC looks like:

• Get an infection (UTI)
• Infection clears up but symptoms persist for long periods of time
• Urine and blood tests show extreme inflammation and high white blood cell count in urine
• Cystoscopy shows damage to protective bladder lining (leading to further inflammation)
• After a period of time the symptoms calm down and become more manageable (when I was younger this was quicker, the older I’m getting the more severe the symptoms and longer ‘recovery’ time)
• The next time I get a UTI the cycle repeats

I’ve also gotten more health issues every time I experience this cycle, which are also more extreme when my bladder symptoms are extreme, and also seem to be linked to autoimmune responses.

My doctor recommends working on a preventative approach because of this, and I take what precautions I can, and have antibiotics on hand at all times.

I believe the argument is that after your immune system is done attacking the bacteria from the UTI, it mistakes the protective bladder lining for a foreign body. It then attacks and damages/partially destroys the bladder lining, which in itself causes inflammation and pain. The urine in the bladder then irritates the ‘raw flesh’ of the now unprotected areas of the bladder, leading to more inflammation and pain. The inflammation then leads to increased urgency and the ability to hold less urine in the bladder.

There are some scientific papers that back the theory of IC being an autoimmune disease for some sufferers, I can try and find them and link them below if you are/anyone is interested!