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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?
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» 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

It it or isn't it? Ignored for two years.....

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It it or isn't it? Ignored for two years.....

Post  mass_hysteria_x on Wed Jun 27, 2012 9:21 am

Hi new here and I'm not sure if I have this or not but hopefully will be finding out soon and any opinions would be helpful x
It all started two years ago I had one of the worst bladder infections I have ever experienced that lasted for a month of feeling like I really needed to pee! After two courses of antibiotics this finally subsided and then came the ITCH and stinging and burning Mad So I went to a clinic got told i had thrush, tried cream nothing happened, went to my doctors was told I had thrush and some swabs taken came back negative and I was left alone and every time I went to see my doctor I was told it was all in my head. No matter how many times I went all i got was thrush treatment even though it came back negative! I was even in tears with the doctor begging him to help to no avail.
So after a while the cuts started appearing and I couldn't even go to the toilet it hurt that much. Went to the clinic again and guess what I was told? THRUSH! So months went by and i was in pain and itching and burning and sore almost constantly. No
Anyway I got a new partner and went to the clinic to be tested at this point I had one of my little cuts which was apparently thrush so while there she swabbed it. Few weeks later I got a letter saying i had herpes type 2. pale (This was 4 months ago) It was scary but I thought hey maybe this was the cause of all my problems and I can finally get it sorted and move on!! So I went to the clinic were they very reluctantly gave me medication. Honestly they were just going to leave me! I had to beg them for medication! They gave me four months worth and said the itching burning and sores would stop. So I'm near the end of my meds now and the only thing that has changed is that I no longer get sores. Which is good I suppose but still I sting daily and burning.
I have changed doctors now two years later and she actually listened to me and gave me some medication (tricyclic antidepressants) to try and said to come back in a months time and I can see a gynecologist.
I hope I am getting to the bottom of this! I don't get dressed most days as wearing anything that goes in-between my legs sets the pain off badly I already suffered from severe depression which has become 100x worse and I have even felt suicidal. I want constant pain gone! I have only had very few days pain free in two years and I am only 21 and just want to live my life! Even daily activities are hard walking can trigger it such as walking or moving in a certain way. Sometimes I just sit here and the pangs of pain come. Some days I am scared to move. It is always in the same place near the opening on the outter labia sometimes but very rarely can be on the inner labia. Anyway hopefuly i should have my diagnosis soon. About to ring for an appointment now wish me luck girls I need some help! Does this sound like vulvodynia to you?
Also on a side note I notice much more irritation when I have pubic hair and tend to keep it hair free through waxing (shaving is not an option was done once and the pain and irritation is caused was out of this world!) anyone else have this?


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Re: It it or isn't it? Ignored for two years.....

Post  bCherie on Thu Jul 12, 2012 10:47 am

First I'm no expert.
Second god that sounds so similar to my story.
I was diagnosed with genital warts and had 'them' (the lesions) burnt off then got told I didn't have it at all. Ask your GP to do a blood test to double check you actually have this problem. (if you do, it could just be a coincidence too)

my personal experience is after having pretty much the symptoms you described and more for 5 and a half years a dermatologist who is an expert in this field in australia told me this...

the last few vertebra in your spine control all the nerve endings in your pelvis region. If you have bad posture (from slouching at your desk or caused by big boobs) and/or are overweight the vertebra at the bottom of your spine can go out of alignment and/or become compressed.This causes the nerve endings to send out 'pain' messages. This is called pain referral. A lot like when someone is told the RSI in their wrist is caused by their bad back/posture when they sit!!

The cure is to loose weight (A MUST if you are big) see a physio (with a specialization in pilates) to get your posture fixed and do physio guided pilates.

I only JUST found this out but I'm very hopeful it will work and start treatment next week! My doctor told me she has helped a lot of women with this problem successfully and she said I will be pain free within a year!

There are a lot of causes of vulvadynia and this may not be your answer but I am telling everyone I find with similar symptoms to mine as in my 5 years of research I NEVER heard this treatment before! If you want to stay in touch to see how I go let me know! Smile and good luck!


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