Hi love!
I'm so sorry you're suffering the way you are. It's so difficult I know. I have had vulvodynia for a really long time as well. There were a few months where I couldn't wear underwear lol. I lol, but dear god, it was AWFUL and I still have it, just fortunately not to the same horrifying degree.
I've said this many times on this site, but once I cut dairy and sugar out of my diet my vulvodynia was reduced SIGNIFICANTLY. I went from barely being able to wear pants to moderate and sporadic flares. So I don't even bother with the butter on list 1. I honestly regard dairy with a healthy sense of terror... it's so delicious and I know once I start it will be hard to stop, but I know what symptoms come with it... for now at least.
For me it's seems like my vulvodynia was related to food intolerances... I wonder if it's the same for you? Maybe there is still something in your diet that is causing the discomfort? I have to say, personally for every single one of my major symptoms (we're talking UNBEARABLE.. you know the feeling) once I've cut out a single ingredient or food from my diet the problem has resolved itself about 85%... enough to function normally and not worry too much about it and to feel like there is a cause effect.
For vulvodynia it was sugar and dairy. For GERD it was garlic. And once I started using the Bomamed shampoo my facial rashes went away almost entirely. I still have certain symptoms and I am still experimenting even while on list 1 to see if there are more ingredients that just aren't doing it for me. Have you gotten allergy test? This couldn't hurt. I mean most likely it will test negative for everything just because IC is annoying like that, but if you were to test positive for something that is in your diet or every day routine then it would be good to get that out of the way!
What about detergent and cleaning products? Are you using everything in it's mildest and most sensitive form?
It is hard when someone tells you you are healing and you can't tell the difference between now and day one... this is something that I am afraid of myself. I was thinking today how fortunate I feel to have this site because I don't know if I would be able to get through this experience if I didn't have the support and stories of everyone else here.
This can't last forever... it simply can't. Nothing lasts forever... so this can't be the exception. Sorry vulvodynia but you WILL go away :)
You have every right to be tired. This experience is not for the weak of heart. We are all tired sometimes. It is tiring as HELL. I think patience is so crucial. We are all at a handicap because our society revolves around instant gratification... we don't know how to wait anymore or trust in time. We are used to having doctors give us two week remedies, maybe two months at most for illnesses.. it's hard to wrap your head around two years... or more, without any guaranteed signs of healing.
What I really want to say through all of this jibberish is that this is a moment in time. A terrible one perhaps, but a moment and it will pass. Until it does we are ALL here for you to encourage you to continue, to remind you that we are in this together and that we are here when you are just plain tired... and you know that each and every one of us has been there too.
LOve love love and wellness!
 
Hannah
 

I am so sorry Breis! I feel the same way, especially on the food front! This is such a difficult journey and hard to keep that positive attitude, but we are all here to support and encourage you and most all celebrate with you when you reach moments of calm and without pain, and moving up food lists! I have the same questions! I have been on cod 3 weeks and really seemed to kick up what we believe to be more die-off, so hopefully it will help to push things out of your system and get you feeling better! One day at time, you will make it through this, and ease into the food! Start slow and I think she usually suggests the veggies first. Someone on list 3 will probably have better suggestions on that front, but really pay attention to your symptoms, even though you have pain now, the pain will increase anywhere from 30 minutes to 24 hours after trying the food, and if does you will know that it probably is too soon for that particular food. I am celebrating for you! You are on list 3, yay! It is scary, but listen to your body! Thinking of you!

Hey Breis,
 
Everyone wrote great posts with lots of good advice.  I just thought I would chime in and give you some extra hope. I've had severe vulvodynia for almost 3 years. I've been treating with Dr. B for the last 2 years.  I have turned a corner as far as the severity is concerned. I still have a ways to go, but I'm confident I will get there. 
 
I can really sympathize with you regarding the weariness of this journey. It is a lot of hard work, but we will get better if we don't give up!  I have found that just when I think I can't take it anymore, something happens to renew my strength. Dr. B will say something that encourages me, or I will have some good days, or someone from the icama will email or call, etc.  I am also proactive in seeking help or comfort when I need it. 
 
Practicing patience with you!

Hey! 
I just wanted to say that I have had VV for a long time and while my bigger issue at first in Tx was the bladder once that got better the VV detox really kicked in and I felt horrible in my vagina for a long time. I preferred the VV pain to bladder pain amazingly  but it was still a long road. It was being addressed the frst two years while also treating the bladder but it really got better in 2011 and I started Tx in 2008 and recently I turned an even bigger corner a few weeks ago I was at 75% better with it and jumped up to an even better level of - I don't have pain anymore where as I still had some burn in my labia. I think it was a matter of it moving or being pulled out of my tissues out and down. So beleive me this VV treatment stuff is working - it just takes a long time to address. It is a good thing to add back foods. Just keep notes on what you eat. You might find you are helped by something. Interestingly the foods that supposedly oxalates full or whatever they call it- helped me. Spinach etc. The thing that helped me so much was finally finding REALLY quality like farm sourced beef. IT was light years beyond the whole foods meat department supposedly selling organic meat. Meat was my only organic thing I could afford.So I just ate regular veggies/fruits and at least tried to find hormone/antibiotic free meat.The recent addition of the farm raised beef was a revelation in how it helped me. I don't know why. Maybe its just these cows. It was free for me cause it is my roomates boyfriends cows and he can't eat it all so he gave me some.Might be worth the splurge. Anyway- I just wanted you to hear from someone who had ( let's use past tense now) VV and is in recovery and getting better and better and better all the tiime beyond even what I thought was possible. :)