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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). …

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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.

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


hey, I did this

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hey, I did this

Post  grassy on Tue Jul 17, 2012 8:26 pm

Hey you guys, I'm a member here, but rarely post. This is what i did. And I am alot better. NOt totally cured, but not crying all the time. I took diflucan, one per week for ONE year! my story all started with one yeast and the burning never left. I was desperate. But anyways, my primary doc put me on diflucan. One per week for as long as i needed. I talked with all kinds of people, And we just guessed that maybe it was a yeast hypersensitivity issue. I'm not a doctor, and i wouldnt do this unless supervised by one. But it did help, and it did take that long too. Long long time. my theory is, that the diflucan kept the yeast down, lessening the hypersensitivity. Long enough for the skins to semi heal and some of the pain to leave. Like i said i'm not cured from the vulvodynia, but am able to think about something else besides the pain. Basically the diflucan didnt bother me much either. But it does have a tendancy to increase v discharge. Hope that helps someone. Maybe something to talk over with your doctors. cindy

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Diflucan

Post  Rainy Day on Sat Jul 21, 2012 8:39 pm

That's interesting. I prob couldn't do that since I am so sensitive to 'real' Rx drugs...but it means I am definatly interested in exploring the yeast connection still...

I am so pissed that most of us have to figure out this thing by ourselves. Doctors suck.

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Re: hey, I did this

Post  stacym918 on Sat Jul 21, 2012 10:13 pm

grassy, are you still taking the diflucan?
I too did long term diflucan, about 3 and a half years ago. It helped, while I was on it, but once off, it did not keep my symptoms at bay.

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Stacy- how long did you do diflucan for?

Post  Rainy Day on Sun Jul 22, 2012 2:44 pm

My doctor only allowed me to do 3 pills for 3 days...and said, "if you aren't better by 3 days, it's not yeast). Grr.....

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Interesting

Post  BpCookie on Sun Jul 22, 2012 3:08 pm

This is the second or third story that Ive heard like this. I talked to my Gyno about it and she thought it was interesting and was willing to try it. She said that I may have become allergic to my own yeast . Unfortunately I was only able to try two months of treatment and she ended up leaving the practice. Perhaps I will talk to one of my other Gyno's.

Take care everyone and keep those vagi-gi's cool.
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ok you guys

Post  grassy on Sun Jul 22, 2012 6:48 pm

Hi everyone. Ok but I am one of those people who are really sensitve to medicines. I almost died from the sulfa antibiotic that started all this. So with that being said, the diflucan didnt bother me much. I had a male PA who didnt know what to do, so he went along with my idea, and i followed along with another lady who had a very bright V specialist. Her specialist thought it was her body hypersensitive to her own yeast, even if its a normal amount. My opinion on the diflucan? for what its worth. I dont think it is a yeast cure. Its just a help.They market as a one pill cure, but i dont believe that.
One a WEEK FOR A YEAR. Then I was feeling better, and tried to go off it. V flared up. So I went like three weeks with no diflucan, then took another pill. Did that a few times, and now I am basically off it. weaned myself off. I would say honestly that I feel 3/4 better. At least not crying over the pain. Not all the way cured tho. But if you want to try it, do it under a doctors supervision, because diflucan is hard on the liver. Then maybe a person could see how it goes, maybe a few months. But one to three pills Isnt enough. I think yeast gets into the tissues and keeps then burning, but i'm not a doctor. just my secret thoughts.

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Ok grassy, we have something in common!

Post  Rainy Day on Sun Jul 22, 2012 10:09 pm

I also had a terrible reaction to my antiobiotic. I took Macrobid for my raging UTI. I had 3 terrible reactions: 1) My blood vessels all over my body hemoraged (petachaie), 2) my ankles became so sore I was limping everywhere for a few weeks, 3) my vaginal, butt, and leg area was burning all over. So, we have something in common...horrible reaction to antiobiotics.

Have you tried a major diet juicing cleanse to to try to rid yourself of all the toxins that a allergic reaction creates? I know some of this antiobiotic must still be bothering me since I still have some light petechaie spots...even though its been 6 months. Normally, petechaie go away in 2 months tops.

Have you tried stretching those muscles at all to try to rid any more of your remaining pain? I only am trying it cuz the butt pain went away...so maybe I was on to something there...

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Oh No!

Post  grassy on Mon Jul 23, 2012 8:08 pm

Its not funny, but i'm giggling. We do have that in common. I got hives, and spots and they lasted two years, I became allergic to everything. Even things i used all my life. Like all soaps, deodorant, foods! almost anything. My skin burned all over my body,burned like our v does now. It gave me a horrific yeast. It messed up my internal organs. What a nightmare. My legs had cramps so bad I couldnt walk either. Hey, never take a sulfa antibiotic. NEVER. It would do you in. You know what? my secret opinion is that the antibiotic somehow Burned the v skins? or it was the yeast it caused? But finally on the interent somewhere i saw other people saying that antibiotics can attack skin and maybe ,just maybe, that did happen. Who knows? the medicines are dangerous these days. And the V skin would be the most delicate of all skin on the body. No i havent juiced or tried stretching. But i go to the chiro all the time, and he says he doesnt think its pn nerve. But he could be wrong too! Thats a good idea, maybe i ought to try stretching.

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spots

Post  Rainy Day on Mon Jul 23, 2012 9:57 pm

Did they call your 'spots' petechaie too? I also had skin that was irrititated slightly all over my body. There were times I itched all over...times I tingled all over...etc. That has somewhat wore off though. I feel like the antiobiotic 'reset' my entire genetic make-up. I have also made an appt with a natural doctor that is well-known in this area for solving 'medical mysteries'. She will probably pack up her office and move after I come to visit her for some answers!

It is nice to know that you must have had yeast of some sort if Diflucan made a difference. That sort of helps me in my strategy for the next move...although I won't try diflucan right away. besides that, doctors don't want to help me, so they wouldn't prescrive it anyway!

For the exercises, I downloaded the Amy Stein book on pelvic pain. And, I googled some exercises off the internet. My butt pain was completely gone, although my toddler passed his flu on to me today...so I crapped water like 5 times in a row at work...so now I am so scared it will 'flare' things back there again!!! Smile

Did you get pain down your thighs too? That's the worst for me. The vaginal area isn't too bad except my pee hurts when it hits the sides...but I notice its always super acidic.

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rainyday?

Post  grassy on Tue Jul 24, 2012 7:21 pm

I have a friend who is a microbiologist, You know, a real brainy smart one. I emailed her right away. She helped me alot. But I love the way you put that. It reset your entire body. Exactly! how I felt. Wow. No i didnt have those kind of spots, I had hives, all over. My skin burned all over. But the hives was something seperate. Two years my one eye would swell up, off an on. My inner stomach parts hurt. I had such a bad pain down my leg(on the antibiotics) . Worst pain i ever had. from the hip, right down to the foot. I went over to a site and looked up the pill. You ought to go over and look up the one you took. Macrobid? I'm going to go look at that one. ASKAPATIENT.COM. Its patient reviews of medicines. Very interesting. The pill I took was bactrim. Horrible reviews, I had every symptom of all the reviews. Even made me have intense panic. You know I have had antibiotics off and on thru life, for tooth things. Never, ever had problems. They are making them nasty these days.
Dont even know if i had yeast? no one would test for it. Lazy doctors. Diflucan, nah, thats a breeze. I was scared of it, but its not bad. Put off taking it for the longest time.

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Re: hey, I did this

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