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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


My (extremely long) Story

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My (extremely long) Story

Post  e31190 on Fri Apr 22, 2016 4:23 pm

Hi guys! This is going to be a long story but if it helps someone feel like they're not alone or offers the opportunity for someone to help me it'll have been worth it.

A little background on the situation: I am 22 now, will be 23 later this year. Things started happening around October/November of 2014. At this time I had been with my boyfriend for about 6 months. I've been going to the gyno since I was 18, get a Pap smear every year, never had any STDs and I am not unusually prone to yeast infections or UTIs, maybe one infection every few years that cleared up quickly. I am still with the same guy I was with then so I've been with one partner throughout this whole process. I was on birth control. I very recently just quit taking it this month to see if it would help. (I am not advocating or trying to convince anyone to go off your birth control or anything like that. I'm just saying I feel comfortable coming off of it and I wanted to see it if helped my situation out any, which I think it has a slight bit) I had been on BC for 3 years at the time this started happening. I had no problems with it whatsoever and never switched brands or anything.

Now on to the story. I wish I had kept a detailed journal of what exactly was going on but I honestly was so scared and had no idea what was happening. I also had no idea that this was still going to be happening years later. Therefore, my time frames and memories of when exactly these events happened is fuzzy and that's so annoying because I can't seem to pinpoint exactly what may have caused this. So with that said, there are two instances I can think of what may have caused this. One, I fell down concrete steps and severely bruised my tail bone. I know some ladies on here have said their vulvodynia problems have started with a back injury so that is plausible to me. The other instance is a little graphic but my boyfriend and I were having sex. We were using a condom [side note: we use condoms almost every time even though I was on BC, if that's important to what may have caused this] We use condoms because it seems even though after plenty of foreplay we still have a harder time inserting even if I am lubricated. On this particular day I'm not sure if we jumped the gun before I was ready or what but it was especially hard to insert, different than other times. While we were inserting, he was going slow as not to hurt me but it was especially painful after complete insertion.

Around this time, the vulvodynia starts but I had no idea it was vulvodynia (still don't I guess) and so I was freaking out. It started out as a tingling feeling all over the vulva. Naturally I go to Google with all my problems and what do you think comes up if you google 'tingling in the vagina area'? Herpes. So I am freaking out, wondering how I could have gotten that and googling what else it could be blah blah blah. I had been with one person and one person only at the time but I was made aware it could lay dormant for years and then pop up so that extra freaked me out. I told my boyfriend. He was calm, told me to calm down, it's probably nothing. So days go by and I swear I looked at my vagina in the mirror at least 50 times a day just waiting for something to show up on my skin. It never does and the symptoms were still there. Then came the burning. A constant burning pain in my vagina that would not go away.

I noticed however that I felt NO pain when I went to the bathroom or when I had sex. Honestly, sex helped. I guess I was focused on other things and I didn't hurt at those times. Then as months went by with no change I noticed that I had absolutely no pain or symptoms during my period. I have never looked so forward to my periods in my life. It was the only relief I had. Naturally, my sex drive went down to about 0. I was constantly worried about what it was, I was in pain and sex was the last thing I wanted to do. My boyfriend was very supportive and understood but still he didn't and couldn't understand. I had no one to talk to until I came across this page. I've read and not participated for a good year now and I finally decided to just join and put my story out there. I still have pain but my symptoms really vary.

Sometimes I feel an inner dull ache, sometimes I feel a concentrated pain in one particular area of my vulva on both sides at different times, sometimes I feel perfectly normal. I still feel fine during period time and sex. But any other time during the day, pain. I have had bouts of pretty heavy white discharge but my discharge goes back to normal after a few days. It doesn't have an odor when it is heavy, it is just a lot. I have been to the gyno but of course 'nothing was wrong'. I know I should keep insisting something is wrong and advocate for myself but it's so disheartening. I don't want to waste money just to be told everything looks fine and that there's nothing they can do.

I try to stay positive and honestly the pain is just a part of me now. I notice it and it hurts but I try to stay positive and continue on with life as normal. Some days are much better than others. When it's especially bad all I want to do is wear baggy sweatpants and cry. I just hold out hope that one day it feels better and stays better!

e31190

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Join date : 2016-03-29

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Re: My (extremely long) Story

Post  emalita on Fri Apr 22, 2016 5:26 pm

Thanks for sharing your story!

Have you considered the conditions Cytolytic Vaginosis or Lactobacillosis? The only reason I suggest them is because you mentioned the pain is gone during your period, which is when your pH is elevated. These conditions are basically too much good bacteria, and the treatments are either baking soda sitz baths or suppositories to raise your pH (killing off the overabundance of lactobacillus bacteria). Some articles reference using it in a douche, but I think that's just asking for more issues.

Some doctors don't believe in this condition, but there are MANY articles published about it. Also, one of the OBGYNs I saw said she didn't care if the medical community didn't believe it or not because she saw it under the microscope many times and relieved patient's suffering by treating it. This was not my issue though, even though she had initially suspected it (my pain is worse during my periods). So I can't comment on the treatment's effectiveness.

If you can't find a doctor who is willing or able to check for this, just be careful before self treating because if that's not your issue, killing off good bacteria will only make most issues far worse.

I hope you find relief!

emalita

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