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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


3 Years and Counting

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3 Years and Counting

Post  painfulvag on Thu Nov 29, 2012 6:31 pm

I have been to 3 gynecologists and the third one finally gave me hope. It was actually for a clinic trial, which I was ok with as long as it got me some answers and relief! Unfortunately I'm pretty sure I got the placebo and discontinued use. I know, I know. I shouldn't have stopped. But also, the clinic told me they would reach out and check up on me every so often throughout the trial to see how things were progressing, and they never did. So today I decided to get online to do some more research myself since I'm tired of getting my vagina looked at by strangers. I thought maybe, MAYBE I had some kind of chronic yeast infection issue (I thought this because the last time I went in, I was told I had a yeast infection even though I did not have any tell tale signs). So looking into the infection business led me back to the vulvodynia, which I had come across before. That led me to the National Vulvodynia Association (NVA) which I recommend taking a look at their website if you haven't already. That's where I found what I am almost 99% sure I have: Secondary Vulvar Vestibulitis Syndrome. Quite the mouthful, but it describes my situation to a T. Sooooo, that brings me to my question(s): Does anyone have a magical cure that I am unaware of?? (wishful thinking...) How do you deal with not being able to have sex on a regular basis? Has anyone tried using lidocaine for a temporary fix? (i.e. topical or Dermoplast) Any feedback will be much appreciated. Sorry for the novel.

painfulvag

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Re: 3 Years and Counting

Post  Alana3 on Thu Nov 29, 2012 8:21 pm

No magical cure, I am headed in for surgery next week which my doctor claims will make me feel a lot better. I really hope so because this sucks.

Like you I had a normal sex life (I read your other post) started on tricyclin and was put on loestrin when you guessed it I started having pain! I got off of that went on yaz, seasonique, and finally mircette (I have to be on BC for my period). My pain never went away so I doubt you haven't given it enough time, I think it's just there (sorry). But that being said, I don't know if my pain was caused because of birth control or other related things. I had to go to a gyno when I was 3 because of bleeding issues caused by Mr Bubbles. When I was 17 I went on a sulfa drug that caused me to have a horrible yeast infection. I am also very prone to bladder infections and bacteria. Thrill.

I don't have a boyfriend so sex on a regular bassis doesn't really bother me, but when I did, we took it slow and it was sort of pleasurable. I have only use lidocaine for pain (it burns REALLY bad when you first apply it).

The things I have tried that didn't work (but might for you): Estrace, a compound of gabapentin ami(forget the name its an antidepressant) and lidocaine, a compound of estrogen and lidocaine, acyclovir (herpes medicine I do NOT have herpes but they thought it would help with nerve endings it didn't and not even a treatment), muscle relaxers, allergy medicine, various vitamins/oils, and over the counter pain killers.

I used the NVA to find my new gyno, and I really like him, he said I will be feeling better in a few weeks and I have to believe him, I have done everything I can do and there's not a lot more I can take. Where do you live? The NVA is amazing and their website is pretty awesome too as it gives a lot of information that I didn't know or needed reminding of.

The most important thing at least for me was to never give up. Don't get me wrong, I was very upset and depressed about this, but I knew someone somewhere could help me. I was proven to be right when I found my doctor. He was the first person to ever actually see exactly where the problem was. Make sure to educate yourself as best as you can so you don't try useless treatments and waste more time. The acyclovir for me was a big waste as it's not even a treatment for vulvodynia. Antideprssants for some people work well, but I didn't want to deal with the side effects, and my doctor claims they take a while to work because of the adjusted doses. Let me know if you have any questions, hope I helped Smile

Alana3

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Re: 3 Years and Counting

Post  painfulvag on Sat Dec 01, 2012 3:54 pm

I live in Arizona. I was trying to look through the NVA for a dr but I guess you have to donate?? Which is fine, I just didn't take the time to do so. I honestly haven't tried anything to solve the problem, I just kind of figured I would be stuck with it for the rest of my life. Thank goodness I have a wonderful boyfriend who has gotten more supportive over time. We had already been together for 2 years before the pain started. Don't get me wrong, it has definitely not been easy for him either, but after seeing me in so much pain I cry or almost throw up after sex, he got the hint. I don't know if I'm interested in antidepressants either, but I'm getting desperate. I've tried a lidocaine ointment which did nothing, but figured I'd try the Dermoplast spray and see how that went. I love the birth control I'm on so I'm also hesitant to switch, but again, I'm getting desperate. Did this one dr prescribe the other treatments you tried or just the surgery?

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Re: 3 Years and Counting

Post  Alana3 on Mon Dec 03, 2012 2:53 am

No I tried other treatments with him but only one I've been going from doctor to doctor and than I found him and to be honest im sick of the maybes just fix it already. I won't even date what's the point? Sex terrified me and ugh I don't know. I can't even wrap my mind around no pain to begin with lol I didn't donate I just found my doc he's in Florida I really like him. Have you been to a specialist

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Re: 3 Years and Counting

Post  tinkerbelle2 on Sat Oct 19, 2013 4:50 pm

Hi girl, do you still post here? I have also had this for 3 years! Hope you're a bit better babes x
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Re: 3 Years and Counting

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