unprovoked Vulvodynia, how common ??

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.

Me!

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

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.

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

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.

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.

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.

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.

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?

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

Yeah Kathy! I love good news!

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

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.