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» Vestibulectomy
Yesterday at 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 …

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


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

Feeling extremely down.

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Feeling extremely down.

Post  fedup.com on Sun Mar 24, 2013 5:40 pm

My problems started about 5 years ago when I was 18/19.

My symptoms started with pain after sex, at which point I went to my university doctors. On both occasions I went it was suggested I had an STI, and on both occasions the tests came back clear yet no further advice was offered. It was then just something I accepted but as time went on pain did get worse so it was occurring during and afterwards, sometimes unbearable.

After 3 years of that, I then went to my local GP several times. On the first occasion, I was diagnosed with herpes and sent to the GUM clinic, who quickly retracted that diagnosis. Next it was suggested I was suffering from thrush, after following a course of treatment that also turned out to be an incorrect diagnosis. My GP then put me on 10mg on amitriptyline on the hope that it would reduce the pain. After a year of visiting my GP and making no progress, I was then referred to a dermatologist at the hospital treatment centre and that was about a year ago. On my first visit I was diagnosed with vulvodynia on the entrance to my vagina.

My dosage of amitriptyline was then increased to 75mg each night which I found unbearable. I work as a teacher and found I couldn't cope with that amount of amitriptyline on top of the early mornings and light nights. I also put on a great deal of weight when taking that dosage, putting on a stone and a half. I was also provided with dilators to try and use to get comfortable with something entering the vagina! That is currently the situation now ... no progress, weight gain and feeling pretty miserable.

My boyfriend has been absolutely amazing throughout it all, really encouraging and supportive which has helped make things less stressful but I just feel like there is going to be no end to it all!

Did anyone else have similar treatments to mine and find them unsuccessful? If so, what other solutions do you have to offer? A| huge thanks in advance!!


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Re: Feeling extremely down.

Post  Alana3 on Mon Mar 25, 2013 2:33 pm

haha yup your story sounds exactly like mine except I refused to go on oral pills so they made a compound for me, but I don't think they do that where you're from. I decided to go ahead with surgery, but I'm not sure that's a big hit over there either. I tried PT which helped, but it was more my skin that was affected than my muscles, and it became excruciating. I guess google a vulvodynia specailst in the location where you're at and go from there, but other than the surgery nothing worked for me Sad I'm glad you had a boyfriend who is supportive, that's important too! Mine cheated on me so we obviously broke up and I felt like a complete loser, which made this whole process even worse. You can try lidocaine on it before sex and maybe that will help you- but you will have to use condoms (which I would do anyway) because his penis will go numb lol. But I would def try to find a vulvodynia specialist someone who does this everyday so they can help you better than a regular gyno. It took my forever to find one, but I am so thankful that I took the time to do so. I traveled all over the place looking for the right doctor and spent crazy amounts of money, but it was honestly so worth it.


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Re: Feeling extremely down.

Post  Kathy100 on Wed May 01, 2013 3:35 pm

Yep - your story is similar to mine first they said STDs but all came back clear, then cystitis gave me antibiotics, then thrush, then just take paracetamol,. Finally gave me amitriptyline but I couldn't take the side effects. Then I found a pain management specialist in v so now I take notriptyline which is the same class of drug as the ami but is newer & has fewer side effects. Also doing physio as my muscles are really tight and its starting to help. The best thing to do is find a dr who specialises in vulvodynia who can put together a treatment plan for you & discuss various options. Lucky you having understanding boyfriend - mine left! Mind you with this I prefer being single - ha!
Good luck.


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Re: Feeling extremely down.

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