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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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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