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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

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

» MAY HAVE FOUND A CURE- PLEASE READ
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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

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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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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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.

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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

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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unprovoked Vulvodynia, how common ??

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unprovoked Vulvodynia, how common ??

Post  zarli on Sun Oct 13, 2013 9:53 am

Hi Girls
Just interested to see how many of you suffer unprovoked 'V' ?
Unlike so many girls on here sex does not cause me any pain during sex, maybe alittle after, I have pain down there all the time when not on medication, after sitting for long periods of time the pain is bad even with the medication and any physical exercise can bring on pain. I feel so sorry for all the girls post I read who are so young compared to me who have to deal with pain during sex, my heart goes out to each and every one of you. It is you girls I wish a cure for more than myself.

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Re: unprovoked Vulvodynia, how common ??

Post  tinkerbelle2 on Sat Oct 19, 2013 4:32 pm

Me!
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Re: unprovoked Vulvodynia, how common ??

Post  Kathy100 on Fri Oct 25, 2013 2:06 pm

Mine started as mild provoked & then developed into the full on unprovoked with back pain thrown in too!

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Re: unprovoked Vulvodynia, how common ??

Post  tinkerbelle2 on Fri Oct 25, 2013 5:43 pm

Kathy, how awful bless you babes! Surely yours is some sort of nerve thing. Do you reckon the back pain is connected to the vvd? Mine is definitely unprovoked and I haven't noticed any triggers really, sitting and jeans irritate it extra. Sex sometimes seems to make it more aggravated, but other times doesn't really worsen the pain. Often it is too painful to even get in the mood for sex.
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Re: unprovoked Vulvodynia, how common ??

Post  mary jane on Fri Oct 25, 2013 6:37 pm

I have it all now. Unprovoked V, persistent arousal, throbbing clitoris, a varicose vein near my vagina, bartholin gland problems (VVS syndrome). I walk around like a duck and after 6 h outside I just feel fatigued and want to collapse on the floor
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Re: unprovoked Vulvodynia, how common ??

Post  Sarah001 on Sat Oct 26, 2013 1:46 pm

Mine started as mild provoked only like Kathy's then changed to full blown unprovoked on the outside and constant rawness in the vestibule while I was waiting for my appointment with the vulvar specialist. I have a connective tissue disorder so have full body pain with my pelvis and low back being the worst so there is a connection.
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Re: unprovoked Vulvodynia, how common ??

Post  Kathy100 on Mon Oct 28, 2013 12:17 pm

I do think that for me the back pain is definitely connected - my first physio found that my lower back muscles were very tight and irritated and that one of the facet joints was immobile. She thought that this could be causing my nerves to be crushed further down and the V pain. She did some work to lengthen and strengthen the back muscles and this did help the v pain a bit. My second physio found that my pelvis and tailbone were mis-aligned so basically my whole pelvis is out of whack & all the muscles are really knotted and twisted causing the v pain & the pain to spread to my back, tailbone & legs. Also when she releases muscles around the lower back / tailbone I can also feel a release lower down.

Tinkerbelle - your triggers sound exactly the same as mine.

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Re: unprovoked Vulvodynia, how common ??

Post  cupcake25 on Tue Oct 29, 2013 2:25 am

Mine is unprovoked, but I don't feel pain all of the time. Most of the time I'm just uncomfortable... itchy, dry, discharge problems. When my V was at its worst I was having a hard time sitting and wearing pants, though. Sex isn't particularly painful, but I suffer dryness and tearing.


--- one thing I feel like I should mention is that I suffer tummy troubles (bloating, constipation), and because of this have developed a small hemorrhoid. When that pain flares up, so does my V pain. I think that they are probably related because they began around the same time.
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Re: unprovoked Vulvodynia, how common ??

Post  Kathy100 on Tue Oct 29, 2013 12:51 pm

I got bloating & stomach pains at exactly the same time as my unprovoked v started. They've largely stopped now thanks to some physio I've had done to release muscles in and around my stomach.

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Re: unprovoked Vulvodynia, how common ??

Post  tinkerbelle2 on Thu Oct 31, 2013 1:23 pm

It's such a mystery! If the physio was able to reduce the stomach pains will they be able to help you with the down below pain?
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Re: unprovoked Vulvodynia, how common ??

Post  Kathy100 on Thu Oct 31, 2013 2:52 pm

Yes - that's the idea - the physio has helped already with reducing the V pain :0)

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Re: unprovoked Vulvodynia, how common ??

Post  Leslieg on Thu Oct 31, 2013 4:58 pm

Yeah Kathy! I love good news! Smile

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Re: unprovoked Vulvodynia, how common ??

Post  senozs1 on Thu Oct 22, 2015 2:41 pm

Hi everyone. Is unprovoked vulvodynia is another name for generalized vulvodynia?

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Re: unprovoked Vulvodynia, how common ??

Post  tinkerbelle2 on Thu Oct 22, 2015 6:06 pm

senozs1 wrote:Hi everyone. Is unprovoked vulvodynia is another name for generalized vulvodynia?

Hi senozs1, I am not hundred percent sure but I think generalized refers to WHERE you feel the pain, i.e. the whole vulva/vagina or just certain areas (acute). Provoked is when you only have pain when the area is touched.

Often the generalized type is also the unprovoked type, if that makes sense. My doctor also used the term 'dysethetic' to describe mine, which means:
Impairment of sensation, especially that of touch.

A condition in which an unpleasant sensation is produced by ordinary stimuli.

She said it's almost like the phantom limb thing - sometimes people who've had body parts amputated still can feel them, it's kind of a bit like that ?

There are a lot of different terms and labels that get thrown about - often they are just a term to describe symptoms rather than an actual diagnosis, as with this condition there's a lot of mystery and still a lack of research.
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Re: unprovoked Vulvodynia, how common ??

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