Hi there, i know this is old but i just want to say i have pretty much the same story as you....except for the food sensitivity part. I also have PN. See my profile pic? It's me on a mountain bike. Biking is the WORST thing you can do for PN, but here i am. I started with IC after a string of bad infections. The pain came and went (good clue that my nerves werent "damaged"). After a horrid year long flare, i got a PN nerve block. (just to rule out other types of pelvic pain). Big mistake, the needle irritation caused me full blown PN. Oddly enough, when my PN started, the bladder pain took a back seat, and eventually went away. I still feel twinges, but havent had a long flare in years. However, the PN beast is my new consistent enemy. Funny thing is, when i first got symptoms, i only had genital pain. No sitting pain (yet) and no rectal pain. It was like this for a few months. When i went to a PN doctor who confirmed it for REAL, and told me i'd have to stop sitting and give up everything i loved, i fell into a deep depression. Guess what? the next day i had sitting pain and rectal pain for the first time. I hadnt heard of TMS yet, but i knew things werent adding up. True "damage" would cause 24/7 pain, and yes, i do have pain every day, but it ebbs and flows. Once i learned about TMS, my first thing was to NOT avoid sitting. I used to be addicted to a special cushion that i brought everywhere. I stopped using the cushion. i told myself "not sitting is simply not an option when you drive, bike, and have a desk job". The pain was worse when i started adjusting my life, but soon it didnt matter if i sat or not. I used these fear techniques to cautiously get back into biking and sexual activity, which were previously horrible triggers. My "flares" eventually started dropping. I still get occasional ones, but they arent as bad. I started slowly doing things, but that's not enough. you have to approach activity with joy and not fear. You know the drill, you do something "bad" and worry "oh crap, was that a stupid decision? am i going to flare my pain? am i being selfish for living my life and potentially irritating my nerves?" It's almost impossible to stop thinking these thoughts, but i've drastically reduced them, and it helped. My "8" pain is now more like a "5". Still life altering, but like i said, my depression has lifted significantly. I am in a huge pain flare right now, but i'm doing my best not to worry about it.
As for eating/drinking with IC, i know i dont have the ulcerative type, but when i first developed pain, i tried adding special antacids to my diet. that didnt help, and soon i figured out that my bladder felt the same pain whether i drank water or tea, or coffee, etc. When i realized this, i said "to hell with the diet". I ate and drank whatever i wanted, almost since the beginning, and as a result, i dont have diet sensitivity. I also had short bouts of IBS and realized quick that diet didnt matter much, so i stopped trying, and it went away.
That being said, if you read up on the "central sensitization" pain model, (it's basically the more scientific doctor term for TMS) you'll see that the brain is amplifying nerve sensation. When that happens, you are simply more sensitive. This includes your bladder. So yeah, if it's really sensitive, then yes, spicy foods can affect it, but the point is, it's not DAMAGING it. Other fun fact? the intestines share a lot of the same nerves as the bladder, so eating spicy foods might actually be irritating your intestines (IBS) but you feel it in the bladder instead. IBS and IC go together for a reason. I tried all the bladder treatments, including painful instills with DMSO and heparin.
Now i just take low dose painkillers, but i hope some day to be off them. Why do i take them? Well pelvic pain is so miserable and panic-inducing, and i need to be able to work and sleep. The pain meds make me more brave to take the step into getting my life back. when i started biking again, i told myself "i'm going to flare...but it's ok because if i overdo it, i know i have meds". Basically, the meds make me less scared to take risks because i know i have a fallback. Like i said, it would be nice to be off of them, but in the meantime, never feel bad about relieving your pain so that you can function. TMS recovery can be a long journey.
