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» UK Vulvodynia Clinics
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» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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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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Re: Has changing diet actually significantly helped anyone?

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