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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


The possibility that for SOME women vulvodynia is a Mindbody syndrome

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The possibility that for SOME women vulvodynia is a Mindbody syndrome

Post  mary jane on Tue Jun 20, 2017 9:22 pm

I am posting this here from another forum, it;s a true story of a user called "ozagnes".
I think that it's possible to have severe stress and anxiety and long term repressed emotions turn into psychosomatic illnesses or central sensitization even.
My pain had no apparent reason apart from a cyst which shouldn't have caused such pain. I also discovered recently that if I am really angry or stressed I get breakthrough nerve pain. I control this using mindfulness. I got the idea from another user called Mouse on this forum.

so here goes:

"Hi all,

I have just been reading all the posts about pelvic pain, and although there are a few women that had (and hopefuly treated?) vulvodynia, I could not find much in 2011.

I am new on this forum, I have been suffering from undiagnosed mild vestibulitis since I had my first intercourse, and 3 years ago it got far worse after a yeast infection (and a lot of stress with my phd, let's face it...). Then it's been 3 years of medical nightmare, I have been on 3 continents, seen the best gynesurgeons and pain specialists, was told I had vestibulitis, vulvodynia, pudendal neuralgia, even IC (which wasn't true since I don't have frequency, but surely the hydro-distention done under general anesthetic said yes). I have tried all the treatments including botox injections (the most painful thing I've had done in my life!), countless needles, and even 2 surgeries.
I've also had back pain as a kid (they said it was my scoliosis...yeah right), anorexia, neck pain, psoriasis, leg itching and my body is full of trigger points, particularly in the shoulders, back, gluts and you guessed it, in the pelvis!

I finally found out about TMS about 2 months ago, have read schubiner and Sarno, and I know now that my "infection pain" was in fact stress, and all the rest that followed was pure nocebo. Incredible when I think about it, as soon as I was told I had vulvodynia, I thought "Oh my god, some women can't even sit because of shooting pain! at least I am not that bad!!!" and bingo, 2 weeks later I was that bad...

I am having progress and regress...some days when I "feel" that I am not sick, it is like enlightment, and of course my pain is much lower, and it feels so light on my shoulders...and then a few days later my old mood is back, the pain increases, and my worries come back. Arrrgggg!
I AM GETTING SO ANGRY AT MYSELF! I know my mind is doing that to me. Until now I think I was scared of "upsetting" my unconscious. I am such a nice goodist person I could not even "hurt" my mind! And today I finally bursted and shouted at myself.
But it is hard to know what to do and what to think, I think I have to reassure the child and shout at the parent.

Anyhow, it would be great to hear from other women, or men that have suffered from pelvic pain (because I am sure that prostatitis, IC, pudendal neuralgia, vulvodynia, piriformis syndrome, pelvic floor disfunction is just the same thing).

Thanks
Smile

agnes"


and


"Hi all,

It has been a while since i have been on this forum because i gave birth!!! A beautiful and healthy baby boy Smile
I had a c-section because i did not want to add the stress and fear of a natural birth since i have pudendal neuralgia/VVS, although i know that natural birth really should not improve or worsen my condition even if that is exactly what ob/gyn are saying...

Now, for those suffering fron chronic pelvic pain, here are some interesting facts about my pregnancy that really make no sense if one was to beleive the medical theories of nerve entrapment/inflammation:
- while putting on 13kgs and therefore clearly adding pressure on my pelvis, particularly sitting, the pain did not get worse! If my nerve was entrapped, how could it not be worse?
- my hormone levels clearly have been up and down, but not my pain, so again, it is not a problem of oestrogen (an ob/gyn had told me that pregnancy often improved the pain momentarily because oestrogen levels rise)
- pregnancy hormones help losen ligaments and muscles, but my pain did not improve during pregnancy, so if my pelvic muscles are tight and sore, it is not just physiological.
My take on this: my pain is caused by tight muscles and blood restriction due to psychological tension that even the most drastic physical changes will not affect.

Oh, and surprise surprise, the pain is barely noticeable since i gave birth, which i think is due to my mind being busy with my new bub rather than focussing on my own emotional pain...although i still have big issues with my mother!
And just the fact of saying "i have improved" brings on the fear that it will all get bad again...damn conditioning and fear!!!

So i hope this will give some reassurance to others on this forum that have been "diagnosed" with pudendal neuralgia or other forms of chronic pelvic pain.

Cheers! "


Please take the time to read what she said here. in her last post ever she said she still has some pain but overall she also had long periods of remission and that things were under control for her.

Source: http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=7017
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mary jane

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