Has changing diet actually significantly helped anyone?

I love my food and I don't want to make myself more miserable by cutting out one of the things that gives me some pleasure and fuck about with some diet if it makes no difference. I haven't noticed any correlation between any foods and drinks and pain levels

oh I hear you on this one. In the first 2 months I lost a lot of weight due to the anxiety and shock ("how can I possibly have nerve pain?"), but now I can't stop stuffing my face with Cadbury's chocolate and pizza.
I take a lot of supplements and I really think they are giving me new appetite levels.
I'm on a bunch of stuff for inflammation, nerve regeneration and yeast, but it takes MONTHS to see if anything works.

My insanity has reached epic proportions. I'm actually looking in multiple sclerosis cures.

also, my new favorite blog on this type of condition has got to be Mad Peach. Good writing skills!
http://madpeach.blogspot.co.uk/

but yeah, I'm drinking the occasional latte and chocolate cake because it's the only comfort I have left besides prolonged bed rest.
Also, tinkerbelle, or anyone, do you ever find yourselves searching like crazy for symptoms and cures? i must be active on like, 5 different forums! Some of the stories are VERY DEPRESSING to read

Oh bless you mary Jane, I don't blame you! I haven't had much of an appetite recently as the longer this goes on, the more downtrodden I am feeling. But YES gotta love chocolate and cake. I am just wondering whether this low oxalate diet business will affect anything. Right now I can't be bothered to stick to something without being confident it'll help. I've tried and failed so much already. Also it's so confusing how something that may help you may also have detrimental effects, such as cranberry juice always helps me when I have a urine infection, I notice a difference, but apparently it's burny as it's acidic. Waaaaa! I don't know what to do and what to eat! Lol

And yep I'm searching like crazy basically every day !!! I want a new vagina! Or my old one. Sometimes I look at women in the Street and im like 'I wonder if she has this' (then I see she has skinny jeans on and I'm like hmmm..no)! I have become obsessed

@ tinkerbelle - I'm sort of jealous of other women on the street as well....
I remember how I've always had painful intercourse 90% of the time (I had stinging pain at the vaginal entrance?)....and I know think that was the start of my vulvodynia.
Strangely, it was only non-painful after a whole course of antibiotics and diflucan....#


back on the diet, I am taking craploads of supplements these days. Anything anti-inflammatory will do.
I also got some Vit D today (it is supposed to be good for chronic pain?) and Magnesium.
I am also planning on buying some MSM, it helps those with diabetic neuropathy
I also ordered this book from amazon: The Mindfulness Solution to Pain: Step-by-step Techniques for Chronic Pain Management
http://www.amazon.co.uk/Mindfulness-Solution-Pain-Step---step/dp/1572245816/ref=sr_1_1?s=books&ie=UTF8&qid=1386071161&sr=1-1&keywords=the+mindfulness+solution+to+pain

It has a lot of common sense tips for managing pain, like drinking a lot of water and controlling your perception of pain...

However, I am still hoping for some LYRICA, it has great reviews on pudendal forums and interstitial cystitis...

Yes lyrica seems to be the one to try! I will mention it to my GP when I can be bothered to make an appointment and go. I'm waiting to see Liz Derrick the dermatologist to see if she can establish any skin disorder blah blah. When I press hard on the vestibule and the internal walls about 3cm inside it f***ing hurts!

Which leads me to consider if it could in fact be more of a muscular issue rather than skin or tissue. And I know what you mean - I feel jealous of other girls all the time!

Mary Jane I've also had MS on my mine! I want to get an MRI because MS causes alot of nerve pains. I have 2 family member with MS and I was just so upset feeling like what the hell is wrong with me. I like my food too and I refuse to give up something that makes me happy when I read your comments ladies I feel like I'm reading my own writing! I just wish you all didnt live so far awayyy GRRR

Me too...I've been reading your posts girls and I feel I could have been writing them...

I've had a brain MRI to rule out MS it was negative, although the more research I've been doing on nerves the more I think Vulvodynia is related.....

I've tried all recommended diets and in most cases my V was worse, I think maybe my mind had something to do with that as I was always hungry.....

I tried drinking lots of water but it put too much pressure on my bladder which irritated every thing.....

I take Lyrica and nortriptyline and together they keep my pain almost gone, I am just very scared they will stop working like amiltriptyline did....

Sorry to be negative...I will never give up I feel at times I'm going insane as its all I think about, I can't enjoy friends as Im
so envious of them and their pain free life, I know that's bad but its the way it is. I would give anything to be able to sit down(not for to long=pain) and share a latte with you all in our leggings or tracksuits haha much love sent all your way
Z xx

Exactly lauren I just want to eat what I want! I don't want this vulvodynia to ruin even that for me.
Zarli, I'd love to all chill together in our trackies with lattes! I love you girls I really do! x

This thread made me smile. I feel exactly the same - no way am I gonna mess about with a diet on top of all the other crap. I'm like you - jealous of girls in skinny jeans who can sit down without a second thought...

Blahhh to jeans! We can all rock our tights and look sexy doing it! I get jealous a lot too. How dare these women have perfect vaginas lol. Just think ladies if we can get through this, we can get though anything hoping you all have better days
<3 Laur

Exactly kathy and Lms !!   

So I watch what I eat today had a salad and vegan cake and I feel really good... don't ask if its a fluke or not haha

FOod!!!!

I find myself taking bites of things im not suppose to because I know I shouldn't have it. I'm supposed to try the low oxilate diet for acid levels which hinder the vulva and bladder and the candida diet for yeast problems. At the end of the day, nothing is safe. Both of these diets contradict the other.

If im having a bladder problem I tend to half ass the LOD and if Im having yeast problems I half ass the CD. Im a chubbs at heart (and body lol) and I don't want pain but I also don't want these particular restrictions. Gaaah!

EvieBee

Alana, that's good ! I love salad. I'm addicted to pasta! And cheese. Gonna try and eat less of it.

Evie, I'm obsessed lol! And I do the same, pick at things I'm not supposed to

That's really frustrating that the low ox and candida diets contradict each other! This is what I mean about diets! Apparently even some fruits and veg you aren't supposed to eat as they're too acidic or sugary, but you're supposed to have you 5 a day. It's like, what the hell do we eat ! ARE WE SUPPOSED TO STARVE !!!! So complicated. I wish I actually knew what foods to avoid, when I had a bad cold I lost my appetite (a rare thing for me hah!!) and I didn't eat hardly a thing for a few days, the vulvodynia was still extremely painful :/

Stay away from foods that affect you personally

I agree with Alana, I can eat chocolate without it effecting me, some girls can't. Its all about researching and experimenting at least with the oxilate.

But i love carbs too, Tink! White rice and pasta. Bleh.   

I never noticed anything affecting me before. It's hard to tell as the pain fluctuates anyway

It could be fluctuating by what you're eating try making a good diary

That's a good idea gonna try and see

Sorry that was supposed to be food diary lol

Diet was a game changer for me, but my symptoms were very obviously affected by food. I would have severe burning 1-2 hours after eating. It took me a while to figure things out, but I realized the culprit was wheat/gluten. I cut out wheat 7 years ago and all gluten 5 years ago and noticed a tremendous difference. I've also noticed that there are certain foods I can eat if I'm in a "good" place that I absolutely cannot eat if I am already having pain. When things are really bad I have a hard time eating fruit, sugar, or acidic drinks like soda. I definitely agree that having a restrictive diet is no fun, especially if you are not sure about the benefits. If you think there may be a link with food, I highly recommend keeping a food/pain diary. It was very helpful for me.

Thanks for replying kdh! I was curious to hear if it had actually worked for some women. Did you have slight vaginal burning too? I want to rule out diet but not sure where to start