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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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Has changing diet actually significantly helped anyone?

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Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Sun Dec 01, 2013 8:52 pm

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
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Re: Has changing diet actually significantly helped anyone?

Post  mary jane on Sun Dec 01, 2013 10:06 pm

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 Sad
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Tue Dec 03, 2013 8:12 am

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
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Tue Dec 03, 2013 8:16 am

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


Last edited by tinkerbelle2 on Tue Dec 03, 2013 11:54 am; edited 1 time in total
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Re: Has changing diet actually significantly helped anyone?

Post  mary jane on Tue Dec 03, 2013 11:47 am

@ 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...
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Tue Dec 03, 2013 11:59 am

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!
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Tue Dec 03, 2013 12:01 pm

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!
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Re: Has changing diet actually significantly helped anyone?

Post  Lms911 on Tue Dec 03, 2013 4:16 pm

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 Smile 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

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Re: Has changing diet actually significantly helped anyone?

Post  zarli on Tue Dec 03, 2013 11:00 pm

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


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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Wed Dec 04, 2013 11:49 am

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
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Re: Has changing diet actually significantly helped anyone?

Post  Kathy100 on Wed Dec 04, 2013 12:12 pm

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...

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Re: Has changing diet actually significantly helped anyone?

Post  Lms911 on Wed Dec 04, 2013 1:52 pm

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 Smile hoping you all have better days
<3 Laur

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Wed Dec 11, 2013 7:21 pm

Exactly kathy and Lms !!  Laughing 
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Re: Has changing diet actually significantly helped anyone?

Post  Alana3 on Wed Dec 11, 2013 7:36 pm

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

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Re: Has changing diet actually significantly helped anyone?

Post  EviE°Bee on Thu Dec 12, 2013 10:17 am

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!

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Thu Dec 12, 2013 10:52 am

Alana, that's good ! I love salad. I'm addicted to pasta! And cheese. Gonna try and eat less of it.
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Thu Dec 12, 2013 10:59 am

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

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 :/
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Re: Has changing diet actually significantly helped anyone?

Post  Alana3 on Thu Dec 12, 2013 11:56 am

Stay away from foods that affect you personally

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Re: Has changing diet actually significantly helped anyone?

Post  EviE°Bee on Fri Dec 13, 2013 2:53 am

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.  Mad 

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Fri Dec 13, 2013 9:42 am

I never noticed anything affecting me before. It's hard to tell as the pain fluctuates anyway
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Re: Has changing diet actually significantly helped anyone?

Post  Alana3 on Fri Dec 13, 2013 11:50 am

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

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Fri Dec 13, 2013 5:24 pm

That's a good idea gonna try and see
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Re: Has changing diet actually significantly helped anyone?

Post  Alana3 on Fri Dec 13, 2013 7:14 pm

Sorry that was supposed to be food diary lol

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Re: Has changing diet actually significantly helped anyone?

Post  kdh17 on Sat Dec 14, 2013 4:22 am

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.

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Mon Dec 23, 2013 9:45 pm

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
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