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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

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 …

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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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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 …

Comments: 4

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: 3

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 …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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 …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


Newly diagnosed

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Newly diagnosed

Post  christina1 on Mon Jan 23, 2012 1:17 am

I was diagnosed this past Friday with VV after having intense burning occurring suddenly in December. I was treated for yeast infections multiple times despite negative cultures. The treatments did not help and some made the burning worse. I have tested negative to all STD's and bacteria as well. I am to start Estrace cream tonight. I'm nervous. I don't like taking meds and this scares me. I don't get this disease at all and am so confused. Does anyone else have discharge with this? It is white, no odor, and looks liked fluffy cooked egg whites. I have had it already. I can only where sweats and don't want to go out. HELP please!!!!! I have been married almost 22 years and this is ruining everything.

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?

Post  AroraNightfire on Tue Jan 24, 2012 4:50 am

Is it the outside of the vagina that it burns? The perineum? The lips? Im 27 and Ive been in a relationship for 5yrs now. Im lucky he is very understanding. He never asks for sex because he knows it will hurt me. Im on Lyrica for pain. When its bad I try Cymbalta along with it. How long has your pain been going on? Is your husband understanding?
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Newly diagnosed

Post  Loulou on Tue Jan 24, 2012 1:59 pm

Hi Christina

I can completely understand and empathise with your confusion and anxiety as my circumstances are similar - I was diagnosed last week after my symptoms started up in November, treated for thrush, all tests coming back negative etc.

Firstly a positive - I think we are both so lucky that we have been diagnosed so early. This means we can start treatment quickly rather than suffering years of pain and discomfort which so many other women have experienced. I'm also telling myself that this means that my pain will have less time to become embedded, less time for my body to have a 'memory' of this type of pain and therefore I have a better chance for my nerves to be 'retrained' back to 'normal' - no idea if this is possible but I will be asking this question when I next see my consultant in a few weeks. I've also come to realise very quickly that it is so important to be as positive as possible (can be hard i know). I've noticed that when I get stressed or upset about this my whole pelvic area tenses up and seems to make it worse (something else i'll be talking to my consultant about).

Regarding the discharge, yes I'm getting a white discharge but not curdy like thrush. My consultant wasn't concerned by this and said that discharge is normal for all women and it can vary during your cycle. I'm just gonna keep an eye on this and note any changes.

As for your treatment, it sounds like your GP/consultant thinks it might be hormonal/menopausal related? Was this discussed? what's your thoughts on this? Has anyone else here had success with Estrace?
My consultant gave me Lidocaine 5% to numb the area (worked the first time but burnt like hell the second time and seemed to worsen my symptoms so I haven't dared use it again yet - I will try again if i get a bad flare up just to be sure). She also recommended i use an emollient - i've been using E45 cream liberally and this seems to have helped - my symptoms have been relatively calm for the last couple of days. My thinking is that my lady bits have been subject to so much over the last couple of months that i'm trying to do the minimum to them at the moment!

I found the Vulval Pain Society's handbook very helpful - it costs £10 but is worth it. This would help you understand the condition. I can't post the weblink (i only joined this forum last week and there's a 7 day wait before i can post a link but if you google Vulval Pain Society you'll be able to access their website)
I also did loads of internet research - though I got a bit overwhelmed by all the potential info available and it stressed me out a bit so now i'm taking it a step at a time.

Hope this is of some help Christina. I felt like you in the first few days after my diagnosis but with help and support (medical and otherwise) believe things will improve.

Loulou

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Re: Newly diagnosed

Post  christina1 on Wed Jan 25, 2012 12:29 am

Yes my burning is only on the outside. I can't touch any of the skin without it burning afterwards. I wasn't really told it was hormonal. Not sure why the Estrace. I'm only 41 and she said I'm young for premenopause but it can happen this early. I am also supposed to do salt baths but so far Im too afraid. Today I saw a new Gyn and she gave me a script for Lidocaine. I havent filled it yet. I was also started on a tricyclics antidepressant yesterday because I am now severely depressed by this. The psychiatrist also thought it might help with the pain. The discharge is annoying. I've never had anything like it before. I'm scared and don't understand why this came on so suddenly. I have never had issues below ever.

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Re: Newly diagnosed

Post  Sarah001 on Wed Jan 25, 2012 12:55 pm

I use salt in the bath and it's been fine for me, start with just a bit and work up to more. I find it odd that they frequently associate generalised V to hormones because to me hormones would only affect the vestibule and not the external area, I have generalised V as well as VVS so it's something I keep coming across online but I don't really get it to be honest!
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Re: Newly diagnosed

Post  christina1 on Wed Jan 25, 2012 5:12 pm

What kind of salt do you use? I was told aquarium salt from the pet store. The Gyn I went to yesterday suggested Domeboro instead. Has anyone tried that? Not sure which to try really.

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Re: Newly diagnosed

Post  shortstuff on Thu Jan 26, 2012 12:52 am

I use Aveeno oatmeal bath usually, this seems to help a lot (and for soap, the Aveeno baby soap when I shower)... or the Vasaline brand bath beads with Vitamin E.. The ocean breeze one for some reason was the best for me, no idea why.

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Re: Newly diagnosed

Post  christina1 on Thu Jan 26, 2012 1:35 pm

OMG, I tried an Aveeno bath and it burned so bad afterwards I almost had to go to the ER, but then I thought seriously what could they do. Maybe I will try the Vaseline needs. Just running plain water down there in the shower bothers me!

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Re: Newly diagnosed

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