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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


Treatment ideas for daily provoked pain

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Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 2:02 pm

Hi everyone,
I have had vulvodynia for three and a half years and have other types of peripheral neuropathy, which developed 6 months ago. My neurologist believes that we will never find a black-and-white cause, and that it is best to proceed just addressing and allievating the symptoms. Since last June (when my nervous system completely imploded), my vuvlodynia has been horrendous. Walking and moving around are really painful, so (despite all of the other types of peripheral neuropathy) vulvodynia is my main concern at the moment.

I am seeing a pain consultant who specialises in gynaecological pain. I have seen so many doctors over my lifetime that I have decided I want to go in to appointments with a few solid ideas of treatments instead of solely relying on the doctor to provide ideas. So I was wondering if anyone has any treatments they would recommend for someone with severe daily pain, that is largely provoked by touch or friction? I want to push for injections- I can't keep applying numbing cream every 2 hours for the rest of my life! Would it be possible to get some ideas? I want to compile a list so that I can discuss the pros and cons of each with her. I would be really grateful for any suggestions.

I have never spoken to anyone with vulvodynia before, so really want to hear from people with the same condition, as I feel so isolated at the moment.
Thank you!
Antonia

TMN1994

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 2:39 pm

Have you tried any oral medications - such as amitriptyline, nortriptyline, gabapentin, pregabalin, or duloxetine?

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 3:26 pm

Hi Painblogger,
I have- I am on amitriptyline 80mg and pregablin 200mg (twice a day). As my problem is global neuropathy I am searching for a medication that will work systemically. However my vulvodynia is so bad that I also want a regional treatment.
Do you have any thoughts? I will use the list of meds that you gave and ask my doctor about each as well so thank you!

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Re: Treatment ideas for daily provoked pain

Post  PainBlogger on Sat Jan 07, 2017 4:46 pm

I also have widespread neuropathic pain (back, neck, hips, shoulders) from fibromyalgia and I've been through all those meds I listed. I'm now on duloxetine 90mg/day and it's the most effective of all I've tried for both the vulvodynia and other body pain. My vulval pain is really minimal now and I'm pain free much of the time. I also take a low dose of tramadol but while that helps my other pain it's never helped with the vulvodynia/bladder pain.

Here's a summary of my vulval pain history: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

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Re: Treatment ideas for daily provoked pain

Post  TMN1994 on Sat Jan 07, 2017 10:51 pm

Thank you for your reply! I have read over the main post and I am going to make notes and take they along to my next appointment.

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Re: Treatment ideas for daily provoked pain

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