I completely feel for you!! 
Having regressed myself the last couple months and not sure what it's going to take to get back, I can tell you a couple things I remember reading on here that I'm trying to hold onto when I have many of the same thoughts/fears as you:
- That Matia will never give up on anyone.
- That some people struggled for months w/ no improvement before getting better.
- That some people had their other things clear up first (as you describe) but their main issue was the last to totally clear.  And that some had greater / continued pain not because things weren't working but because things were working -- i.e. the immune was getting stimulated, which I read could kick up more pain.  (I think?? Someone can correct me if I'm wrong on these.)
- But mostly I hold tight to remembering that those 'tough cases,' a few of whom I've talked to personally, suffered sometimes for even a year or two w/ little to no symptomatic relief yet even they eventually recovered.
The first part of course is not a pretty thought when you're in the thick of it, b/c who wants to be in pain for two years, let alone two more minutes of this!  But most everyone eventually seems to get better. I think Matia once said 95%, and I try to consider that that's pretty good odds.
Also, sometimes when I'm really down I try to conjure up a warrior image that I'm going into battle, going off to war, perhaps for quite some time, but I'm fighting for my health and it's worth any sacrifice.  
I totally understand your frustration/fears/hopelessness and I feel your pain.  Hang in there as best you can and I'm sure many others will be able to shed more light and hope on this subject of setbacks/regressions.
 

DO NOT GIVE UP.  I too have had setbacks that have lasted for weeks, and I thought I was one of the unlucky few who could not get better.  I even thought that I had made my body worse, but I was wrong.  Matia did not let me give in to this horrible illness.  She worked with me until we got it right.  She even listened to me when I broke down while we were on the phone.  She assured me that no one has gotten worse while in treatment nor after treatment.  Since we could not figure out what was wrong, she suggested that I email her a list of all the foods that I was eating.  She highlighted the ones she thought might be bad for me and a few days later I started feeling better.  I have been in treatment for a year and a half and I am so much better now.  Perhaps, you can make a list of all of your foods, creams, soaps...to help you see what might be hurting you.  Also, think back on your vacation.  Did you eat something that was not on the list?  Were your probiotics properly refrigerated before you got them or while you were on vacation? If you were feeling better in April, then you can start feeling better again.  Think positive even if it is hard to do.  I wish you the best, and always remember that you are not alone.    esalinas 

Hi, I am new in treatment with severe IC.  After reading the posts on this site, I noticed that that some of the more serious cases took at least a year until they started to see major improvements (a few took 18 months until a big breakthrough was achieved).  I am not going to evaluate my progress until next year.  Then I have desided to stick with the program for another year.  I know too many peope that have fully recovered from IC/VV to give up easily.  Where else could I turn?  In the midst of pain, it is so easy to get discouraged.  Don't give up.  Your best days are ahead!

I am one of those long term patients that took a long time before I started to really feel better for significant periods of time. I can't tell you how many ups & downs I experienced in the first couple of years. And I think it's quite normal to question the path you are on when you are in pain. What kept me going was knowing that Matia had helped so many people and when I would talk to her or email her she never seemed discouraged by my symptoms. She has been doing this for so long and that gave me a lot of confidence to continue with the program. I wasn't willing to accept what Western doctors were telling me which was that IC was a one way street, there was no getting better. I had too much of my life ahead of me to live in that state of pain and fear. I have had periods of time when I feel symptom free and think I've finally got this behind me, and then frequency and irritation creep back in - but it's manageable, the pain is nothing even close to what I had when I first started treatment (it's like a 1 or 2 on a scale of 10). A lot of my initial symptoms have been gone for a while. Things like the cold hands & feet and just feeling cold overall took a good 2 years for me to get a handle on - but now I don't have freezing cold hands and feet! and I don't have a sweater on in 90 degree weather - for me that is a very strong sign that my body is more in balance. Just keep communicating with Matia, sometimes it takes a while to hit on the proper combo, but you will get there. And remember that your body's balance is always changing - I have been on what feels like hundreds of different herb and probiotic combos, and I can see that my body is changing because sometimes what worked for me in the past doesn't work at all a few weeks later. It's all just so puzzling. Sometimes I get down on myself because it's taking me soooo long to get better, but if I take a look back at where I've come from I know I need to keep moving forward.
Carol

I know the dissapointment you feel! I have been trying to get well for so long and really even though I didn't really start on the best path for doing that until one year ago I feel beyond ready to be well- my patience wears REEEEEAL thin some days and on those days god help anyone who might say the wrong thing to me! Let me tell you a story...Now this may sound a little out there but I don't really care-but you've been warned so here it goes. Sometimes and I don't do this that often but if I'm a situation and I am baffled beyond a sensible answer or conclusion  in my waking conscious then I get all mystical and consult an oracle called  the I-Ching for some clarity to the problem/ questions that got me all knotted up. Now its not something that I would recommend unless the truth is something you want to hear because sometimes I am absolutely stunned by how accurate my readings are- and sometimes its something I don't want to hear at all.Think for a moment how much faith and trust and courage we summon everyday to continue following a diet that most of our culture thinks is werid and nutty and not getting the return you want to see is without a doubt really discouraging. But the fact that you actually had the changes in your body that you reported- the IBS- gone the bladder symptoms that showed up and are almost gone- the  changes in nerve pain- these are things that indicate that it is working. The VV for me is the last thing that I got as a symptom or rather it may have been there for years but it got much stronger a few years ago along with the increase in bladder pain and it got more pronounced to me as my bladder got better my attention seemed to focus on it. It is proving to be the last thing to leave. I'm 11 months into treatment and I still can't say that I have gotten rid of bladder/VV pain but it has improved considerably in its quality and so on. ALOT happened between 7- 11 months! I really think that improvement can be relative. what I was excited about at 7 months and what I was excited about at 11 months are different. You are putting alot of pressure on yourself to be well NOW or at least show significant changes the way you want to see them but your body is showing significant changes at 7 months as you shared and your body is doing the best it can! You are going to be fine. I did an I- ching casting recently and the message was along these lines... the process of the healing is what is important right now- not a quick fix and to it said for me to release the endless fixation on the end result. that the healing I was seeking was going to come from the PROCESS - that there was certainly things to learn ALONG THE WAY- that I would not learn from the end coming now and not in its time. That there were layers of things to emerge in time that had significance to examine and release and trying to force an end result- was waste of my energy.to stop trying to speed up the process with heavy expectations - to realx and know it would happen but in its own time. It was me who was simply being impatient and that I should accept the responsibility of the situation knowing and trusting that the current "stagnation" will shift and I'll be on my way.  This has proven to be true. when I look in the mirror I see my dark eye circles have gone away and I'm seeing less yeast come out of me.  Lavish time to get better on yourself trusting that you will improve because you have had pockets of "better" before you can reach them again and again and again until they get longer and longer. Bladder, legs, Vagina, hips, TMJ, GI tract - all connected and they all improve. Expanded definations of improvement should include - changes and shifts etc... thank you for listening and reading. hope this is helpful or encouraging. you are encouraging and inspiring to me. Mary 

I just want to say thank you to Honeybee for your well-articulated, helpful and from-the-heart share. I am always so taken with your posts, learn so much from them and they just speak to me, even in my darkest moments.

I've had so much going on in my life lately, I haven't had a chance to post, but have been checking in on this post because it has helped keep me going, too.  Thanks for sharing when things are going awful, because it helps me a lot, as much as hearing about all the improvements.I too have been going through a rough time when things seem like they are not working again.  I was having extreme success, my urgency, my only real noticible symptom, was almost minimal for a few days at a time, and I was so happy, and felt that I was finally noticibly responding to the herbs/probiotics.  But that didn't last and now I've been back to having my urge flaring a lot again, and changing protocol almost daily.  Even though I read and read and know that it's part of the disease, and Matia told me it was going to be this way, I still get so discouraged and scared and depressed because that urgency really takes so much joy and ease out of my life.  So thanks to all for sharing your experience.  It keeps me hopeful, and going.  And knowing that this too shall pass.  I'm still holding on to the victory that my symptom has been actually minimal for a number of days out of the last 2 1/2 months.  That's progress.