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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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 …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

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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