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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

vulvodynia and herpes connection

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vulvodynia and herpes connection

Post  alice77 on Sun Apr 15, 2012 11:45 pm

hi all!

just an idea, what if vulvodynia is simply a kind of herpes without outbreaks? I know that many have tested negative for herpes. But there are several variations/types of this virus. According to my doctor around 80-100 stamms. So what if it is just a kind that can not be properly diagnosed? I.e. herpres zoster gives people long term nerve pains, even when the outbreak is over. The VV pain is a typical nerve related pain and herpes lives in the nerve ganglias. I know that many sufferers (including me) have flares around ovulation. I recently researched the connection between herpes and estrogen. There are some links between starting birth control, estrogen and herpes outbreaks.
In the beginning of my journey with VV i was tested for herpes, the results came back negativ. Two month ago I undergo some injections for my immune system. Unfortunately, my body reacted in a bad way to them, something went wrong and I got a kind of rash (like chicken pox, but I don't know exactly what it is and my doctor either) on the skin near my vestibule. This got better now, but not completely gone. During the outbreak I had a kind of tenderness and pain in my lymph nodes and my VV flared very very bad. Immediately after the outbreak I have done blood tests for herpes 1 and 2 type and herpes zoster. Only the results for herpe 2 were slightly positiv (for the first time!). But the rash I got doesn't look like typical herpes.
Just a little backgrond: I have had suffered with a classical type of vulvodynia for three years. Tested for everything negativ. It came after an antibiotic prescription (cipro) for an UTI. Tried many things, nothing has really helped with the burning so far. I was not sexualy activ since the beginnning of VV. Since that UTI I have from time to time a slight tenderness in my lymph nodes on the right side, and with this tenderness my VV flares also! it happens very often during the ovulation.
sorry for my english, i am not a native speaker Smile


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Re: vulvodynia and herpes connection

Post  shortstuff on Fri Apr 27, 2012 10:49 am

I'm not sure that herpes would explain everyone's experience with VV on here... but, I have also been diagnosed with HSVII. So maybe for some people there is a connection?


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Re: vulvodynia and herpes connection

Post  pepper7 on Sun Apr 29, 2012 9:51 pm

Ive has V pain since I was 12/13 and there is absolutely no way I could have come into contact with the Herpes virus in that area at that age-I requested a test for herpes that came back negative not so long ago (even though Im not sexually active I just wanted to rule everything out) I think mine came from untreated yeast infections that damaged the nerve endings-A specialist I saw said that the nerves in that area had become so used to being in pain and being itchy that it became the default feeling for them. Crying or Very sad


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Re: vulvodynia and herpes connection

Post  penfebruary on Sun May 06, 2012 5:23 pm

I have tested negative to herpes. If this could be the case, how would I go about finding out? ):

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Re: vulvodynia and herpes connection

Post  Kate1981 on Wed Sep 12, 2012 8:49 pm


I had shingles 16 years ago which is herpes zoster. I had them very low down in my groin area. My gp said its a possibility this could have caused v but usually the nerve pain associated with shigles would have come sooner. I have also been tested for herpes type 1 and 2 all negative. The consultant advised me herpes outbreaks would be shorter and not as painful as v. Im very confused by it all and im looking for the answer every day. My mum has crohns disease psoriasis and anemia all problems with autoimmune im wondering if thats related to me.


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Re: vulvodynia and herpes connection

Post  LillyK on Thu Sep 13, 2012 5:15 am

I have actually wondered this before myself. I have tested negative multiple times. I have also heard people say before that it might be related to HPV. I tested negative for that too. I do, however, have cold sore outbreaks, or herpes of the mouth, and I've often wondered if that could somehow cause the V, because I know when I get cold sores, I have pain all over and feel very tired, etc. So I do believe it is systemic, even though they say it is just the area on your mouth that is affected.


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Thyroid antibodies

Post  scrumptuous on Fri Sep 14, 2012 7:20 pm


I definately think that all these medical conditions are connected. Apart from the diagnosis of vulvodynia 21 years ago (I too have had tests for herpes, all negative), I further developed fibromyalgia, litchen planus (ulcers in the mouth), IBS and more recently thyroid antibodies. My own body is making antibodies and destroying my throid. Definately when I am stressed, all my conditions are worse.



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Re: vulvodynia and herpes connection

Post  LillyK on Sat Sep 15, 2012 4:41 am

Helen, I agree with you that stress is a HUGE factor! I think stress triggered me to have vulvodynia again. I'm trying everything I can to de-stress and think positive. I am so sorry you have suffered so long. It's really so unfair.


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Re: vulvodynia and herpes connection

Post  Ouch123 on Tue Dec 08, 2015 11:24 pm

I think this is very true for some. One way to teat it is to take an antiviral (valtrex) and see if it helps


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Re: vulvodynia and herpes connection

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