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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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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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 …

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Who else has intense constant burning at the vaginal opening without provoking ?

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Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Mon Jun 16, 2014 7:23 pm

alien 
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  Zbrown on Mon Jun 16, 2014 11:01 pm

Mines pretty constant yeah

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Mon Jun 16, 2014 11:26 pm

Mines constant during the day, thank God it goes away at night while I sleep, I'm relaxed then. Pretty sure its muscles with mine.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  ringostarr26 on Tue Jun 17, 2014 2:07 am

same here! constant burning...i too feel better when i am asleep lol some days i just can't wait for bed!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Wed Jun 18, 2014 2:07 am

same! i can usually sleep okay. weird huh?!
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Tue Oct 07, 2014 11:38 am

bumpy bump
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Wed Nov 05, 2014 5:15 am

Yep that's mine to a T. i've been diagnosed the same as you Tinkerbell.

I have been trying caledula baths for the burning, and i have noticed it's brought the inflammation down slightly.

What have you tried that's helpful?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Fri Nov 14, 2014 12:28 pm

Hey girl! What's caledula? It's not something i've heard of! where are you from x
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Fri Nov 14, 2014 3:14 pm

tinkerbelle2 wrote:Hey girl! What's caledula? It's not something i've heard of! where are you from x

Oh i spelled it wrong. Smile It's calendula, marigold flowers. I got the idea out of 'ending female pain' ... you steep the flowers on the stove for about 15 min, or until it turns an amber color. Then strain and put it in bath water. It's supposed to reduce inflamation. I used a VERY small amount the first few times, because at this point i am terrified of anything reacting to me and flaring me worse. But it helped! Not by a lot, but there is a noticable decrease in pain after my bath for a few hours. So i'll take it. Smile

What all have you tried so far? Have you discovered anything that works well? I'm still trying to avoid the antidepressant angle, but i'm getting closer to acceptoing that i need to try something else. Sad

I'm from Canada. How about you?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Wed Nov 19, 2014 6:35 pm

Hi gang, just wanted to tell you that I have actually tried epsom salts soaks. I have always thought that epsom salts was salt but it's not it's magnesium. Makes you relax. Saw it on Dr. Oz. Tried it. It helped me feel better all over, I did get out and shower afterwards didn't know if it would dry my skin out or what so I washed it off. I put two cup fulls in a warm bath and soaked about 15 - 20 minutes I think. Didn't look at the clock. But I'm going to try it again today. Oz was talking about helping with magnesium deficiency and helps relax. Go figure. Smile

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  Guest on Fri Oct 02, 2015 1:55 pm

Hello, I have a question for anyone who's experiencing constant pain. I have this constant burning for the last 7 months and haven't had an hour without it. But my doctor told me that I do not have generalized vulvodynia but I have vestibulitis. My pain is localized but needs no provoker. Is this normal?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  PainBlogger on Fri Oct 02, 2015 4:32 pm

To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Thu Oct 22, 2015 5:52 pm

PainBlogger wrote:To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

Hi Painblogger, yours sounds similar to mine! Mine varies in severity. It's not usually good days or bad days , sometimes, but for me it's more like good and bad moments within a day and can change drastically seemingly at random. If it's not that painful I can be distracted from it, if it's bad I'm in fire and it's all I can think about.
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Constant

Post  amyhp on Thu Oct 29, 2015 4:05 pm

I have a sore pain 24/7. The burning flares. Sometimes worse than others.

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Constant burning pain

Post  let's kick this on Tue Apr 26, 2016 12:20 am

I as well have constant burning pain and it goes into my rear too. My I wish these doctors could find something so many of us suffering. I did buy a vaginal probe for a tens unit and it helped a couple times. I use it 20 mins a day with estrogen cream.

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Constant burning

Post  let's kick this on Sat May 07, 2016 3:55 pm

I think the tens unit is helping the vaginal burning

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Constant burning

Post  Antaea on Wed May 11, 2016 8:59 pm

I too have a constant burning around the opening of the vagina. Most of the time in the clitoris and the inner labia too. Nothing helps. It gets worse during the day. The nights are real night mares. Then I feel it most. I try with lidocain and tramadol but now I shall start with Neurontin. I have a very demanding job. teaching flute and piano both in elementary school in the morning and lessons in culture school in the afternoon and evening. I dread every day.
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Constant burning

Post  let's kick this on Wed May 25, 2016 9:53 pm

Antaea,

I am now trying a chiro / homeopathic doctor she doesn't seem to be helping me yet. Tomorrow will be my 4th time she has put me on some natural pills but doesn't want me to use the tens unit while she is treating me. Have you been to a pain specialist?  I'm thinking that is my next step this is terrible I feel bad for you having to work. I sit on ice packs through out the day.

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RE: Constant burning

Post  Antaea on Thu May 26, 2016 11:32 am

I am without pain most of the time - the Neurontin (Gabapentin) has worked miracles. The side-effects are ceasing, even I cannot drive up to 17 hours after the last capsule.
I am convinced that it is of great importance to get advanced pain medication, Gabapentin, Pregabalin, Amitriptylin, Noramitryptolin) as early as possible. Topical ointments may worsen the situation.
After 3 to 6 months of constant pain, the brain develops so called pain-memory. The nevrons react like getting pain-impulses, even they may not exist. It is like having tinnitus, where you hear sounds which do not exist, due to nerve-damage. (Please excuse my clumsy way to explain. Sometimes, I lack expressions. Enlish is only my third language).

I got my diagnosis and treatment only 2 months after experiencing the first pain. But I had an episode 8 years before, and probably provoked V as a child. So I recognised the pain. Then I nearly lived in the Net to gather the necessary information and presented the symptoms for my GP so that he could not do otherwise than saying, "yes you have vulvodnyia. You shall start with the minimum dose of Neurontin" I am convinced, otherwise i wouldn not sit here on my donut pillow and without a screaming vulva.
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constant burning

Post  let's kick this on Fri May 27, 2016 3:34 pm

My chiro is having me try Aloe gel and Aloe drink I used it twice yesterday and it did help some!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

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