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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 …

Comments: 4

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


Anyone else doing this?

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Anyone else doing this?

Post  Sarah001 on Sat Jul 09, 2011 8:20 pm

I'm currently reading a book about pelvic instability in pregnancy (I'm not pregnant I just read everything pelvic related I can find!) and there's some interesting stuff in it. It doesn't mention V but as alot of us have pelvic stability issues I wondered if anyone else was doing this: Is anyone else standing with most of their weight on one leg more than the other? It's mentioned as something that upsets the alignment of a lax pelvis and keeps the misalignment going and as we all know there's a link between V and these kinds of things. I realised I was doing it really badly and weirdly I was putting most of my weight through my worst side. Anyone else doing this? To find out you need to concetrate on what you're doing when you stand still, or use a Wii board and it will tell you!

The author talks alot about tight adductors too and says tight adductors usually equal tight pelvic floor muscles and she's right again, I've got trigger points galore in my adductors and I've only just got the left side so it will abduct to normal amounts with my knee straight so it's more the long adductors on that side and the short ones on the right. And I have noticed when I lay with my legs bent it tightens them up really badly and it shouldn't. My adductors were the reason the doctor who "diagnosed" me suggested physio as a first course of action because when she got me into examination position it looked like I was tensing my thighs really badly and I wasn't at all.

Just interesting to me, especially the weight bearing one as if I was asked which leg I use more I'd have chosen the other one but sure enough I'm putting most of my weight through the loosest SI joint and just helping keep the dysfunction going! Rolling Eyes I know some of you won't think this is a very relevant post and apologies for waffling on but I know there's a big link between V and SI joint dysfunction. Anyway, I'll stop now...! Laughing
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Re: Anyone else doing this?

Post  lolainslacks on Sun Jul 10, 2011 12:30 am

I find this really fascinating. I have been shifting my weight constantly from one leg to the other for years. I seem to be incapable of standing straight up -- my weight is always dramatically shifted onto one side. My lower back becomes very sore if I stand straight for too long, so I do this to make it more comfortable for myself.

I have a lot of problems with my pelvic floor muscles. I can tighten, but I have never ever been able top untighten. I just don't know how to relax those muscles, and descriptions of how other women do this have never helped me. Because I have so little control, they seem to have a life of their own. I am trying to use dilators every single day, but if I'm stressed, or upset, or sometimes just for no reason whatsoever, my muslces will feel a lot tighter than usual, and I am powerless to do anything about it, which really limits my progress. It seems that my pelvic 'situation' changes from day to day and I just have to wait and see what it's going to be like. I don't have vaginismus, and have been told repeatedly by specialists that I don't, so it's not a case of me having 'muscles spasms', it's just a mysterious tightening that I can't explain.

I don't know much about pelvic instability or what causes it, but I am grateful for this post. I think it is worth looking into this sort of thing, and now that I know there is a possible link I will definately be making a conscious effort to change the way I stand. Thank you.

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Re: Anyone else doing this?

Post  Sarah001 on Sun Jul 10, 2011 12:27 pm

You do sound as though your pelvis is unstable, I too do the shifting thing even when I look like my weight is balanced between both feet it isn't. The author also said to put the weight onto the heels more and feel the lower back as you do it so you can find the position that is the best for relaxing the back muscles. I'm like you and my back gets really tight and tired if I stand for any length of time but apparently our muscles aren't supposed to get tight from standing, if we stand correctly the muscles are relaxed, who knew?!! Laughing I now make a point of shifting my weight until it feels centred and checking I'm on my heels by wiggling my toes around and if wiggling my toes doesn't affect my balance I'm doing quite well! I also wonder if you have a leg length discrepancy? A pelvic rotation can cause this and it's something that would also make you shift from one foot to the other, have you had that checked by a physio at all?

I'm hugely interested in pelvic instability because I've had it for years (long before V came along) so I've done alot of research into it and consider myself to be quite knowledgeable at this point! One physio said it was a shame I couldn't get better because I'd have breezed through the physio exams!! Laughing The book I'm reading is one I bought out of desperation to see if there was anything else I needed to know and it's useless to me in parts because it's about pregnancy but great in others. It's one of the few books I've read that mentions inflares and outflares in detail and I have one of each of those and have noticed it's hard to find information on them so I'm reading it thoroughly now.

I have the same issue with my PF, I can't release it at all and it's always in spasm even when I'm trying to release it which again is related to my pelvic instability and is my body's way of trying to stabilise the pelvis. Pelvic instability has alot to answer for!
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lolainslacks

Post  Aussie on Mon Aug 01, 2011 5:50 am

Have you tried biofeedback? I did not even know how to relax my muscles down there either untill I tried this. The visual just makes your brain do what it is suppost to and you just relax the muscles. Then you can hold onto that feeling and do it without.

The machine I used had lights on it. The aim was to get the lights to the bottom by relaxing the muscles. There was a small probe too.

Hope this helps.

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Re: Anyone else doing this?

Post  Sarah001 on Mon Aug 01, 2011 12:38 pm

Yes if you remember Claire I'm the person who started with the ridiculous resting tone of 20. I got to 12 last time I went but that was November last year and I'm sure my resting tone will have crept up with all the stress I've had this year so far. The machine I was on didn't have lights it had numbers in a graph kind of setting that you watched as you did the exercises and I once managed to get to 6 but it was a blink and you'd miss it occasion, 12 is the lowest I got for any length of time which obviously isn't low enough but I have a vicious cycle going on where I stop clenching the pelvic floor then lose all stability in my right SI joint which tightens it back up and the pain makes me clench again so stabilising the SI seems to be the only way I can break that but my hypermobility issues mean that's next to impossible. I'm currently trying to get enough money coming in to afford physio again but it won't be for a while yet.
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Re: Anyone else doing this?

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