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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


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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