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» I'm sorry im rambling
Today at 5:49 am by Jet227

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 0

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

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: 7

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 …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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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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