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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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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 …

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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). …

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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.

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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 …

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Who else has intense constant burning at the vaginal opening without provoking ?

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Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Mon Jun 16, 2014 7:23 pm

alien 
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  Zbrown on Mon Jun 16, 2014 11:01 pm

Mines pretty constant yeah

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Mon Jun 16, 2014 11:26 pm

Mines constant during the day, thank God it goes away at night while I sleep, I'm relaxed then. Pretty sure its muscles with mine.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  ringostarr26 on Tue Jun 17, 2014 2:07 am

same here! constant burning...i too feel better when i am asleep lol some days i just can't wait for bed!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Wed Jun 18, 2014 2:07 am

same! i can usually sleep okay. weird huh?!
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Tue Oct 07, 2014 11:38 am

bumpy bump
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Wed Nov 05, 2014 5:15 am

Yep that's mine to a T. i've been diagnosed the same as you Tinkerbell.

I have been trying caledula baths for the burning, and i have noticed it's brought the inflammation down slightly.

What have you tried that's helpful?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Fri Nov 14, 2014 12:28 pm

Hey girl! What's caledula? It's not something i've heard of! where are you from x
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Fri Nov 14, 2014 3:14 pm

tinkerbelle2 wrote:Hey girl! What's caledula? It's not something i've heard of! where are you from x

Oh i spelled it wrong. Smile It's calendula, marigold flowers. I got the idea out of 'ending female pain' ... you steep the flowers on the stove for about 15 min, or until it turns an amber color. Then strain and put it in bath water. It's supposed to reduce inflamation. I used a VERY small amount the first few times, because at this point i am terrified of anything reacting to me and flaring me worse. But it helped! Not by a lot, but there is a noticable decrease in pain after my bath for a few hours. So i'll take it. Smile

What all have you tried so far? Have you discovered anything that works well? I'm still trying to avoid the antidepressant angle, but i'm getting closer to acceptoing that i need to try something else. Sad

I'm from Canada. How about you?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Wed Nov 19, 2014 6:35 pm

Hi gang, just wanted to tell you that I have actually tried epsom salts soaks. I have always thought that epsom salts was salt but it's not it's magnesium. Makes you relax. Saw it on Dr. Oz. Tried it. It helped me feel better all over, I did get out and shower afterwards didn't know if it would dry my skin out or what so I washed it off. I put two cup fulls in a warm bath and soaked about 15 - 20 minutes I think. Didn't look at the clock. But I'm going to try it again today. Oz was talking about helping with magnesium deficiency and helps relax. Go figure. Smile

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  PainBlogger on Fri Oct 02, 2015 4:32 pm

To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Thu Oct 22, 2015 5:52 pm

PainBlogger wrote:To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

Hi Painblogger, yours sounds similar to mine! Mine varies in severity. It's not usually good days or bad days , sometimes, but for me it's more like good and bad moments within a day and can change drastically seemingly at random. If it's not that painful I can be distracted from it, if it's bad I'm in fire and it's all I can think about.
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Constant

Post  amyhp on Thu Oct 29, 2015 4:05 pm

I have a sore pain 24/7. The burning flares. Sometimes worse than others.

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Constant burning pain

Post  let's kick this on Tue Apr 26, 2016 12:20 am

I as well have constant burning pain and it goes into my rear too. My I wish these doctors could find something so many of us suffering. I did buy a vaginal probe for a tens unit and it helped a couple times. I use it 20 mins a day with estrogen cream.

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Constant burning

Post  let's kick this on Sat May 07, 2016 3:55 pm

I think the tens unit is helping the vaginal burning

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Constant burning

Post  Antaea on Wed May 11, 2016 8:59 pm

I too have a constant burning around the opening of the vagina. Most of the time in the clitoris and the inner labia too. Nothing helps. It gets worse during the day. The nights are real night mares. Then I feel it most. I try with lidocain and tramadol but now I shall start with Neurontin. I have a very demanding job. teaching flute and piano both in elementary school in the morning and lessons in culture school in the afternoon and evening. I dread every day.
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Constant burning

Post  let's kick this on Wed May 25, 2016 9:53 pm

Antaea,

I am now trying a chiro / homeopathic doctor she doesn't seem to be helping me yet. Tomorrow will be my 4th time she has put me on some natural pills but doesn't want me to use the tens unit while she is treating me. Have you been to a pain specialist?  I'm thinking that is my next step this is terrible I feel bad for you having to work. I sit on ice packs through out the day.

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RE: Constant burning

Post  Antaea on Thu May 26, 2016 11:32 am

I am without pain most of the time - the Neurontin (Gabapentin) has worked miracles. The side-effects are ceasing, even I cannot drive up to 17 hours after the last capsule.
I am convinced that it is of great importance to get advanced pain medication, Gabapentin, Pregabalin, Amitriptylin, Noramitryptolin) as early as possible. Topical ointments may worsen the situation.
After 3 to 6 months of constant pain, the brain develops so called pain-memory. The nevrons react like getting pain-impulses, even they may not exist. It is like having tinnitus, where you hear sounds which do not exist, due to nerve-damage. (Please excuse my clumsy way to explain. Sometimes, I lack expressions. Enlish is only my third language).

I got my diagnosis and treatment only 2 months after experiencing the first pain. But I had an episode 8 years before, and probably provoked V as a child. So I recognised the pain. Then I nearly lived in the Net to gather the necessary information and presented the symptoms for my GP so that he could not do otherwise than saying, "yes you have vulvodnyia. You shall start with the minimum dose of Neurontin" I am convinced, otherwise i wouldn not sit here on my donut pillow and without a screaming vulva.
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constant burning

Post  let's kick this on Fri May 27, 2016 3:34 pm

My chiro is having me try Aloe gel and Aloe drink I used it twice yesterday and it did help some!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

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