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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 …

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

New to this, here is my story.

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New to this, here is my story.

Post  NJay12 on Thu Nov 01, 2012 6:09 pm

I used to be a healthy person who rarely got sick. My worst (and possibly only) health diagnosis I have really ever had is hypothyroidism which was discovered a good 5 years ago. I take levothyroxine daily ever since the discovery and have been fine since. However, a year ago I started feeling a pressure/heaviness in my pelvic region. I went to the doctor who ran a bunch of tests and couldnt find anything other than an ovarian cyst in which they told me was the cause of the pressure/heaviness in my pelvic region. I accepted that answer, however, a month or two later my vulva became enflamed and sore. It's never really itchy, just very red and sore. I went back into the doctor who diagnosed me with a yeast infection. They gave me diflucan and an over the counter prescription cream to use-- which didnt help. I went back in after that dosage was done and they told me that they didn't see any yeast but they would give me another round of prescriptions anyway to see if it would help clear up any small amount of yeast that might be left that they're not seeing. This again, didn't work. I am married and have been with the same partner for 7 years but I had them run STD tests anyway, just to rule that out and those all came back negative. No UTI, no BV, everything was clear. Eventually the soreness and redness either went away or at least toned down because I didn't notice it anymore. Until a few months later it came back- again another round of yeast meds for yeast they found- again it not helping, but then eventually weeks down the road going away. It came back for the 3rd time a month or so ago but this time it came back with urinary symptoms which I was then diagnosed with a UTI. (They didn't find any yeast this time so no yeast meds this round.) I've never had a UTI before in my life, but after having this one I realized thats what the original pelvic pressure/heaviness was that I was feeling at the start of this. It was the exact same feeling- even though when they checked me back at that time, the cultures and tests were all negative. Anyways, after trying 3 different medications it finally cleared up the UTI and the urinary symptoms went away, but the vulval soreness and redness is still there. My gynecologist explained to me the condition of vulvodynia, showed me the ropes on using the right soaps, buying the right underwear, etc. (which none of that seems to help.) and now, even with no UTI, the urinary symptoms come and go. I think it MIGHT be related to my hormones and my cycle- as I notice the week before my period and the week after the vulval irritation is horrible. But at any rate- I am accepting the answer the doctors are giving me which is vulvodynia and IC.. it just still shocks me how it came about out of nowhere. One day i'm fine, and now im battling this. One thing I had noticed since the start of all of this was it was also accompanied by lower back pain. I recently decided to see a chiropractor to see if that would solve the issue but all it's really done is taken away the low back pain. But I'm also on my 3rd week at the chiro so maybe I just need to give it time...

I'm so glad to have found this forum. It's nice to hear from people with similar stories as mine, even if it is unfortunate that we have all come together over this very annoying issue..


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Hi! And here's my story

Post  angrybird84 on Thu Dec 20, 2012 9:11 pm

I'm new here too. Your story sounds similar to mine, so I will share ... and I think you'll understand exactly where I'm coming from.

About a year and a half ago (August 2011), I had a short-term relationship which I ended because the guy was an asshole. It was after I slept with him I started noticing severe vaginal irritation. I went to the doctor who prescribed creams. Nothing helped. It turns out it was a yeast infection, but one dose of diflucan and it was gone. And then shortly after, I ended things with the guy.

Less than a month later, I met my current boyfriend. We'd been having sex for about a month and everything was fine with that - no burning with this man at all (before I go on, I am "unofficially" engaged to this guy now!). However, I went in for a routine urine test in January of this year ... just to check to make sure I got no STD's from the previous guy. I never heard anything about the results from my doctor, so I figured everything was fine.

On the evening of February 10th at exactly 6 p.m., my whole life basically went out of control. That's when I first noticed the terrible burning after I went to the bathroom. (Don't mind me with my exact knowledge of dates, I'm OCD and I'm a news reporter). Over the next 24 hours, it progressed extremely quickly. While at work the next day, I started noticing huge amounts of blood in my urine and I almost fainted from the combination of the pain and just looking at the blood. One of my coworkers used our radio station's community cruiser to drive me to the nearest hospital ... it was kind of funny, but heck, we promoted our brand at the same time. My boyfriend rushed down to the ER to meet me, and after about two hours, I was given a diagnosis of a UTI and handed Macrobid, and then told to "eat a bagel" and go home. Going home was hell. I couldn't sit and when I got home, the pain tripled in intensity. This is coming from someone who has a congenital heart condition and has had three heart operations - I'd never felt anything like this in my life.

In the end, it eventually calmed down that night. The antibiotics seemed to kick in immediately and so did extra-strength Tylenol. I stopped peeing blood by the next morning. But then the symptoms never went away entirely. I kept returning to the doctor or the nearest emergency department, only to be told the UTI wasn't gone and they would put me on additional rounds of antibiotics. Then a few days later, I'd get a call saying I didn't have a UTI and to go off them. This happened THREE times, and over a period of four weeks, I must have seen my family doctor and the ER department at least eight times. One time I was admitted for the day and given an IV morphine drip - but all that did was make me itchy, exhausted and nauseated! I remained in severe pain, between the burning and stabbing sensations. There was also a guess from my family doctor that I may have passed a kidney stone, but a CT scan showed my kidneys were clear. A bladder ultrasound a month later showed there was nothing wrong there either.

In the midst of this, I found out from a resident at my family doctor's, that my urine test had come back positive for infection, and NO ONE called me. I am disgusted to this day, because now I believe my vulvodynia could have been prevented if this infection had been taken care of immediately in the first place. I am continuing to look for a new family doctor, because my current one has been useless and has not taken any initiative in helping me get back to normal. The other problem was I was having trouble going into work. Working at a radio station means you've got interns nipping at your heels all the time. I didn't want to call in sick because I knew that meant I was putting my career in jeopardy, but there were literally days I could not get out of bed.

This story is getting extremely long, so I will get to the point. After what must have been 10 specialists, four rounds of STD tests, 10 urine tests, and god knows how much else, I saw a specialist yesterday who diagnosed me with vulvodynia. It has been one hell of a year ... the pain never goes away for more than an hour, but even then, the area remains sensitive. There are some weeks where I work very hard to function normally, and other weeks where I can cope well. I was better for a few weeks in April, and then from September to the middle of November, but my boyfriend and I had sex three times in a week and then suddenly, I was thrown back to the way I was in March. I tried not to let it get to me this time. I've just been promoted to news anchor at my job and I can't let this get in the way, so I don't. I work through it, even on my worst days. I just make sure I have an ice pack with me at all times, and that I don't wear jeans.

Dealing with two chronic health conditions is a pain in the ass, but at least I know this isn't all in my head. I'll be tested for IC in a few months. Dreading the cystoscopy but what else can I do? Besides, at this point, whether I have IC or not won't make much of a difference. It will just give me peace of mind, knowing I won't be tested for a million STD's anymore.

This is how vulvodynia has affected my life:
-I haven't worn jeans or belts in 10 months. Doing so causes such severe pain that I only last for a few hours and then suffer for the next day or so.
-My boyfriend and I rarely have sex. He worries every time we do that it's his fault I'm in pain, because these issues only came up since we've been together. I feel so bad for him. Luckily though, he is EXTREMELY understanding and never complains. Don't know how I found such a good man!
-I carry an icepack with me at all times, even in the newsroom!
-I can't wear tampons during my period.
-My periods are absolute HELL. The combination of the blood on the pad burning my skin and the feeling of the blood coming through my vagina is horrid.
-I can't go swimming or dancing - swimming is not a big deal, but I love to dance, so that sucks.
-I can't sit through movies. I love baseball and football, but I usually sit through games in severe pain.
-I have to drink a lot or it burns like hell (both inside and outside) when I pee. Tea makes it sting, but I won't give it up because it's the only thing I can drink in the morning.

However, I think I'm coping quite well with it otherwise. In the past year, I got a major promotion at work and achieved my career goal - at the age of 28!, had my boyfriend set our wedding date (the ring will come soon!) and enjoyed an incredible road trip - even in severe pain!

Every day, I try to focus on what is so good about my life ... focusing on that helps to alleviate the pain a little bit. Not sure how I'm going to go about my treatment because everything costs so much money.


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