I know what you mean about trying to explain how you feel. I never know if it's really a burning pain or maybe it's more sore or sometimes it just feels weird and achy, it is so hard to explain. I've only been on the herbs for 4 weeks now. I've had some good days and some not so good, I think it has to do with die-off and just getting used to the supplements. Hang in there, I'm sure it will get better, everyone says it does.

HI I'm four months in and it is real yoyo ride for me.  I have had some good days in fact in May I had 9 out of 28 days good. not symptom free by any means but pain level down to a 2 which for me is good.  But this last week my pain levels have gone sky high again, I am suffering extreme anxiety and chronic fatigue.  Dr B introduced the Bifo and I think it was too much too soon so it has been dropped and I'm hoping things will ease off. 
Yhis whole nightmare started nearly a year ago and I have had pain 24/7 since.  I know alot are up and down, some get relief within a very short time some it takes alot longer but the up and down is hard to cope with emotionally.  However there are so many that are the other side now and despite how frightened I am inside we three will be amongst them one day.
It is going to take time for our bodies to adjust and get themselves well our biggest challenge is having the enermous amount of patience needed to get through while suffering but so many have, we have to believe we will get there too.
Keep going we are so near the beginning.  As you are both so new and so am I if you would like to email me direct please do.

I think the best metaphor for this experience is a rollercoaster.  Keeping that in mind has helped my experience in this treatment.   If you can regularly keep in mind that image and that concept, it really changes how you view things.  If you're in a plane and you start going down, you're thinking this can only be bad, you're freaking out, etc. But if you're in a rollercoaster and heading down, you don't freak out (though it can be scary for sure) and you don't think it's always going to be down b/c you know you're on a ride that goes up and down... and you also know it ultimately ends.
 
This treatment makes no sense, so try not to take anything too seriously or scarily.  In the beginning I had some sustained periods of doing better and then inexplicably got worse, sometimes much worse, and sometimes for a while.  A million times I was sure it wasn't working for me or something was wrong, or I was a bundle of emotions from it yo-yo-ing all over the place.  Even later in treatment you think you're finally there and doing so much better and then bam, a new level (thought not near as bad as before).  It DOES eventually even out. It just takes time, and that time is on your body's time, not your preferred schedule, which is so difficult. But also allow yourself to be disappointed and angry and frustrated and all the other emotions -- we're human and this is a hard process that gets little-no sympathy or understanding from the outside world.  I'm just saying there's a difference between feeling your emotions and letting fear/hopelessness take over.  If this process wasn't so successful, I'd even say you have more reason to be scared, but almost everyone seems to recover in time, so most of your negative thoughts & fears are unfounded - that can help to tell yourself that, like 'here's my thought/belief, and now what is the evidence?'... kind of deflates that saboteur in us all.
 
I also understand about not knowing if you're communicating right.  I rewrite my emails multiple times to try to get it accurate, b/c it's hard to use language to communicate something like pain or all these weird symptoms... argh.

IC-Hope, why do you think you have been in treatment for so long? Was your IC a tough case to begin with? Apologize beforehand for asking a personal question. You don't have to answer, but if you do, I would really apreciate your honesty.
Thank you.

I came across this article through reading old posts here. It hit the nail in the head for me. I am a CLASSIC case of Cipro poisoning described in the article.
 

I now understand why other than classical IC symptoms, my liver hurts sometimes, I have tingling sensations, insomnia, joint pain, set back after intense work out, etc, etc. 
Recovery depends on the level of damage and age. Many people recover in two years. If you don't recover in five, chances of returning to normalcy drop. There is always hope though.

Copy link from here and paste it in your browser 
http://www.antibiotics.org/resources/side-effects.pdf

Hi deir,
By the time my next appointment comes, i am usually at such a relief to see Matia, that i sometimes get paranoid that i might be giving her wrong information. It seems so important to be specific with our answers, and sometimes i just don't think i have the answer bc i haven't yet seen a connection. Like last month when she asked me if i still felt cold, i told her i was tolerating cold better. However, this month i am still going to bed with socks and a turtle-neck and a sweater over!!!! I started spreadsheet to keep a journal. I can now study it and see the good days and bad days on a weekly template, i am hoping it can help me give her better answers. Also new things come up, I used to only have burning pain in the urethra before, with rawness etc, but now i get throbbing/pulsating in urethra area on a full bladder. So i added a new section to my symptoms journal to track this. Actually, maybe i should share this journal template with others to get some advice improving it.
IC-hope- You are so right about the rollercoaster sample. It is the perfect example, and really hope there is a stop to that ride someday!
 

Please don't worry when you see I've been in treatment for a while; I turned into a unique case.  I had mild-moderate IC for 10 years (flares, then remissions), then it became severe (huge flare that never went away) soon before I started treatment.  After 1.5 years Matia got me almost asymptomatic in the bladder.  (I still had some other issues to resolve, minor by comparison, that she said would come around with more time on the protocol -- first she does cleaning out, then strengthening the system. Remember, getting to the asymptomatic point is NOT the end; you are still vulnerable and need to strengthen.)  Anyway, I was eating at List 4-5, having agave treats, was able to have sex again!! with no problems, it was amazing. I also had some other stuff clear up that I previously couldn't fix with anything I tried (i.e. acne, hair suddenly going super oily and slick against my scalp).   ....  It was only a minor leg injury w/ crazy fibro-like reaction afterwards that derailed me, but amazingly it didn't do much to my bladder overall, it's really held up, even with her giving super strong herbs for my legs that she says she never gives bladder patients.  So please hold the hope it will happen for you too. I doubted a million times, had so many setbacks, etc. but in time my bladder responded.  We're all on a different timeline, and it probably involves so many factors, so don't blame yourself it if takes longer b/c we can't see what really went on/is going on inside or what contributed and to what degree, or you'll make yourself mad.
 
Selichan/Deir -- Keeping a journal is the only way I can keep track of my symptoms!  If this is helpful to you....
I keep it in the middle of the house so I can jot things down as they happen / as I think of them.  I rate IC pain 1-5 (I found it's a lot easier than a 1-10 scale), and I use abbreviations to minimize time & trouble, i.e. BF or BH or BT = ic belly full/heavy/tender, H = headache, N = nauseous, V = vag issues (w/ variations on it), etc.  And I put a L / M / H (low/medium/high) next to each for severity.