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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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). …

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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.

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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 …

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burning and PVD?

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burning and PVD?

Post  ringostarr26 on Fri Mar 15, 2013 8:12 pm

MY gyn originally diagnosed me with vulvodynia because i experience extreme burning in the vulva. It is not provoked and I feel it for most of the day. After visiting a pain specialist however he believes my pain is related to the pelvic floor. Is burning a common effect of PVD because I assumed that muscles were responsible for more of an achey feeling. I'm really stressed about what exactly is going on?

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Re: burning and PVD?

Post  Alana3 on Fri Mar 15, 2013 8:21 pm

I have both

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Re: burning and PVD?

Post  cba321 on Sat Mar 16, 2013 11:15 am

I have pvd and I also have the burning pain at times without touch. I think it is more related to irritation of the nerves, when muscles are in spasm they can produce by - products that irritate the nerves. Doesn't necessarily have to be something touching the nerve.

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Re: burning and PVD?

Post  Sarah001 on Sat Mar 16, 2013 5:24 pm

I have unprovoked diffuse burning plus pelvic floor dysfunction and when my physio realigns my pelvis it sets the muscles off on a severe burn for a few minutes afterwards so it's the muscles that are to blame in my case. I had severe burning in my neck and shoulders a few years back from tight spasmed muscles so muscles can definitely cause burning.
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Re: burning and PVD?

Post  ringostarr26 on Sat Mar 16, 2013 5:47 pm

Have you found that physio helps the burning pain? i have been looking to try it for some time. I get burning in my feet every time my V flares up and I never understood why.

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Re: burning and PVD?

Post  Alana3 on Sat Mar 16, 2013 6:33 pm

It def helps but until I got my vestibulectomtly it did nothing for me because a penis was impossible. Now I do it and it def helps

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Re: burning and PVD?

Post  Alana3 on Sat Mar 16, 2013 6:43 pm

But the burning from vulvodynia was way worse then muscular pain. I know there are different degrees and all but God the v was terrible it is possible to have both but the burning sensations for me were different

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Re: burning and PVD?

Post  ringostarr26 on Sat Mar 16, 2013 6:59 pm

Yeah i'm dealing with a horrible flare right now. I was symptom free for 3 years and just this past summer the burning started all over again. I'm at my wits end. I am currently using valium suppositories for the muscles but the burning is unbearable.

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Re: burning and PVD?

Post  Alana3 on Sat Mar 16, 2013 9:36 pm

Did you have the surgery or what did you use for the original to stop

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Re: burning and PVD?

Post  ringostarr26 on Sun Mar 17, 2013 1:13 am

i tried amytriptyline with no success and just dealt with the pain. It disappeared on it's own actually which i'm sure is rare. It took over a year for it to be gone completely but I was 3 years 100% pain free.I just can't pin point what started this flare. I made myself believe that I was drinking too much coffee its the midst of exam season but i have no idea. I was told surgery for me was not a good option because my V is not provoked. By PVD i meant PFD i should have corrected myself earlier. I have the more generalized V that burns constantly. It does not get better or worse with sex... not that i have any these days in my agony. Sad

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Re: burning and PVD?

Post  Alana3 on Sun Mar 17, 2013 3:39 am

Ugh idk I guess I was lucky mine actually did go away and then it came back again yuck. Then I had the surgery where are you located

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Re: burning and PVD?

Post  Sarah001 on Sun Mar 17, 2013 2:35 pm

In answer to the earlier question I'm not at the stage where I can have my pelvic floor released yet so I don't know how well it will work but I do know if I keep it relaxed my pain decreases and if I clench it my pain shoots through the roof. The constant burning is just hell, I take Ami for sleep but it didn't help my burning so I'm also on Lyrica now which helps to a degree even though I can tell the sensation of the skin isn't right through it if that makes sense. I would try medication at the same time as other things just to give you some relief. Have you been told your pelvic floor is tight? I'm assuming you have because you've been given the valium but valium won't remove trigger points, the only thing that will get rid of them is internal massage. It's also a good idea to get your pelvic alignment checked out, I keep banging on about this I know but my physio has treated loads of women with V and she almost always finds a pelvic alignment/stability issue that's set the pelvic floor off.

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Re: burning and PVD?

Post  Loulou on Sun Mar 17, 2013 9:16 pm

Hi ringostarr26

So sorry to hear you've had a relapse. But i think you could be right with your diagnosis of PFD and exams being partly to blame for relapse. Presume exam time has been stressful for you? Stress can cause you to tense muscles (stomach, butt, pelvic floor) without you even realising. Holding tension in muscles can cause trigger points and misalignments, all leading to pain/burning. I'm pretty sure now that a prolonged stressful period at work combined with a twisted sitting position at the computer (I would lean forward and over on one hip) were the straws that broke the camel's back for me. I was later diagnosed by my chiro with a misaligned pelvis which i'd probably had for years, muscles had been compensating in ways they shouldn't have, and then bang - an intense period of stress and posture triggers and my vvd started.

So definitely get a physio and/or a chiropractor to check you out for misalignments and trigger points. What's worked for me is getting my pelvis realigned and then doing regular yoga and pilates to strengthen muscles to hold everything in place.

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Re: burning and PVD?

Post  ringostarr26 on Sun Mar 17, 2013 11:41 pm

thank you all for the replies. i definitely think it is all the stress. I also suffer from TMJ! Fun eh? and that too is acting up. I just need to find a good PT so if anyone knows one in Toronto that would be so helpful!

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Re: burning and PVD?

Post  Loulou on Mon Mar 18, 2013 12:05 am

For your TMJ have a look at Peter Egoscue's book 'Pain Free' - he has some specific exercises for relieving TMJ pain and discomfort.

I used his book 'The Egoscue Method of Health Through Motion' to help realign my pelvis (its not a vvd book nor is Pain Free). It really helped and he made a lot of sense.

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Re: burning and PVD?

Post  Alana3 on Mon Mar 18, 2013 1:01 am

Just go to an orthodontist and get a splint I work in the field that's what they do and I have tmj

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Re: burning and PVD?

Post  Sarah001 on Mon Mar 18, 2013 11:43 am

There's also a trigger point in the neck that can mimic TMJ, my friend thought she had it and when I showed her the spot on her neck she pressed it and it reproduced all her "TMJ" symptoms so working on it over a few weeks got rid of the problem.
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Re: burning and PVD?

Post  ringostarr26 on Mon Mar 18, 2013 3:14 pm

I do have a splint, multiple actually. it hasn't helped much. Massage and dry needling helped a bit. I am just hoping once the stress of exams is over my flares calm down.

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Re: burning and PVD?

Post  Alana3 on Mon Mar 18, 2013 3:29 pm

Do you have clicking/popping? sometimes it needs surgery because its too far advanced, and do you still have wisdom teeth? Sometimes that can cause an issue too. I mean I clearly don't know what your problem is, but just saying there are definite ways to help your TMJ. Trust me my jaw is very musical when I eat haha its painful too sometimes. But I'm a surgical candidate at this point blah I've had enough surgery recently! Heat and advil might help if you're having a painful flair. Also, if you sleep with a window/fan on you may consider turning those off because they oddly can trigger pain in you jaw.

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Re: burning and PVD?

Post  ringostarr26 on Mon Mar 18, 2013 4:53 pm

mine is all muscular from what my doctors say. MRI's all came back negative and I don't get popping in clicking. Most of the pain i get is in my ear to be honest so surgery is not an option.I think all my TMJ problems started from having my wisdom teeth removed actually. It seems like it is easier to control the TMJ flares over the V flares though. At least with TMJ doctors know what it going on! This may sound weird but when my TMJ is at its worst my V flare is not bad ad vice versa. I think everything is connected and there is a constant pull on my muscles. I just wish there were better studies out there to help us all suffering with this awful ailment.

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Re: burning and PVD?

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