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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 …

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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.

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 story from a san diego girl

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my story from a san diego girl

Post  Melissa777 on Sun Jul 10, 2011 7:29 pm

I see Dr Willems. Apparently there are maybe only 2 vulvar specialist in SD. Dr Willems is very kind... but he is very stuck on estrogen and steroids... so i want another opinion. I will say the estrogen cream he RX for me is from a pharmacy company- free of propolyn glycols- etc: It is soothing when applied,and sometimes i feel it works, sometimes im unsure. anyhow im going to see dr michael Kyrchman http://thesexualhealthcenter.com/dr-krychman/ and from what Im hearing, he is wonderful... I will see soon- in the beginning of august. You see my case is not complicated per say because its not severe but whats complicated is figuring out what caused it. and having so many opinions from so many different doctors is so confusing. Some say it could be yeast some say its an allergy to things such as yeast and molds (being i tested positive for these) some say its the boric acid that caused it... its pretty confusing I do know I once suffered from this (but not this way) in 2002-2004 I had a heavy over growth of group b strep (which i no longer have thanks to fem-dophilus) treated it many times with anti biotics but back then i never had redness around the opening of my vagina i simply just had pain on the left side thats it and it finally went away when i started taking fem-dophilus- i never had burning or itching or soreness on the outer lips like i sometimes do now. Dr willems is convinced i had dermatitis down there and thats what caused this... but really here is what happened in august 2010 started dating a new guy... never had intercourse, just once oral sex- i did immediately feel itching after it was over(never felt that before with oral sex) and i went and rinsed off it went away- around the same time i was highly stressed with my old job and barely sleeping.. and 3 weeks later developed the worst yeast infection used a 3 day over the counter clotrimazole- felt better but felt some burning discharge than got diagnosed with BV- tried this stuff called balance active from the UK (bad idea)which inflammed my skin- felt like acid eventually that went away so i decided to do tindamax because i didnt wanna do anything vaginally, did that- took care of BV. Took diflucan every 3 days for about a week and was fine than in december had an itch- other than that i felt ok got diagnosed (or misdiagnosed) from my reg gyn with glabrata yeast (all cultures including gen pap came back NEG for all non albican and albican yeast) but at that time had used boric acid for almost 2 months OUTCH than got dermatitis got prescribed desonide (low dose cortisone) from my derm- helped greatly but now left with this odd on again off again burn sensation once in a while pain, and once in a while itch again all tests for yeast, all bacteria including GBS, staph, ecoli, stds negative so im almost thinking maybe i just have been over treated and this is gonna take a lot of time to heal. yes im def sensitive to products... i cant use rephresh or replense or many vaginal lubs... and even emu oil did not react well to me. nor does coconut oil it wasnt til i left everything alone and started using this estrogen cream that things started to feel better slightly yes this even means only showering once or twice a day rinsing after urination tends to make my dermatitis flare.... because im drying out my skin and i dont have IC so i dont think urination is my issue but the issue that confuses me- is this yeast? allergies? or over treated skin needing to heal... thats why im getting a second opinion. dr willems i will say is great and helps a lot of women, but i think he is pretty straight fwd on his own theory of how to treat women. and estrogen can cause cancer so i try and only use mine once or twice a day for 2-3 days per week rather than every day - have any of you used bust.com/lounge? i love that site its for women- they need a VV page did any of your VV get started from a yeast infection or bacterial? or was it manly hormones? injury? or products?? just curious Melissa


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Re: my story from a san diego girl

Post  naomi on Sun Jul 10, 2011 9:42 pm

heya!

ur symptoms sound pretty similar to mine...completely stuck in a rut!!!

heres my story...can compare notes then http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/660437

xxxxxx
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hi naomi

Post  Melissa777 on Sun Jul 10, 2011 10:20 pm

Hi there! =)
I read your story... it isnt too much like mine. as I only had ONE yeast infection- which cultured pos for yeast
and then a short bout of BV right after treating the yeast infection

My symptoms didnt get to where they are now until after i used boric acid for 1.5 months

Im also not sexually active and am dealing with this.
I dont have the sand paper feel

just some reddness
and off and on itch or burn
i have been tested numerous times for yeast
including one culture that took 30 days to grow
and all NEGATIVE
and this is even when i have not used any antifungals
i dont know the whole thing is a mystery. I even tried dr crandalls theory- it made me worse!

Im now finally somewhat better- but seeing a new well known specialist soon
wish me luck!!!
Melissa


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Re: my story from a san diego girl

Post  Zazu on Mon Jul 11, 2011 1:24 pm

Hi Melissa,

We're all familiar with the story of trying many things to fix the sensations that come with vulvodynia. It took me a long time to move away from thinking that the feelings down there were coming from some sort of infection or skin irritation. Those are the things that we all know about, right - yeast, STIs, allergic rashes, etc.
There are generally three causes of vulvodynia (some people have more than one) - 1. nerve pain 2. muscle pain and 3. hormone-mediated pain. Yours sounds quite likely to be the first one. Bear with me here. What can happen in the vulva is that the body's response to an infection (like yeast, etc.) or a chemical irritation doesn't turn OFF, even when the source of the original problem has gone away. The immune system keeps fighting down there (with 'mast cells'), triggering chronic inflammation, and the growth of too many nerve endings that sense pain. The result is that the nerves are too sensitive and too excited - regular touch can be painful because you have too many nerve endings (even from jeans or bicycle seats), or the nerves can start firing pain signals all on their own. Sometimes the skin turns red, but sometimes you can't even see anything. And of course, all the tests for infections or skin allergens can come back negative!
What can complicate this is that the pelvic floor muscles, triggered by the frequent pain signals from your nerve endings, can seize up. You might not even really notice it, but they can be in a constant state of contraction. You might start to feel weakness or pain in your lower back/hips/groin. Worst part is that this contraction of the muscles can also cause lactic acid build up, which your nerves will interpret as burning (ever had sore muscles that burned after a work out??).
Whether your tight muscles cause your nerves to become overly sensitive and excitable or whether your nerves become highly sensitive (and grow more endings) because of infection/irritation and then trigger tight muscles is different in different women. It's a chicken and egg problem. But it locks your pelvis in a vicious cycle where it doesn't heal from the original problem, and keeps triggering the sensations of burning, itching, aching, tingling, even crawling that women can feel with vulvodynia. Some women only hurt when their vestibule is touched (the area around the opening to the vagina), called vulvar vestibulitis syndrome/provoked vestibulodynia, and some women feel pain all over the vulva, constantly or temporarily, called general vulvodynia.
This is all from two books called "The Vulvodynia Survival Guide" by Dr. Glazer and "When Sex Hurts" by Dr. Goldstein. Sorry this turned into a novel! I just remember the confusion of going from being obsessed with yeast to understanding the nerve pain, and hope that this might help offer an alternative point of view of what might be going on. Hope I got this info all correct, - other ladies jump in please if you notice anything is wrong!!!
Good luck with your new appt!!
Best,
Katie

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thank you =)

Post  Melissa777 on Tue Jul 12, 2011 6:08 pm

thank you for that Katie!
It really helped

BTW- I dont have "pain" its more either a burny-ish type of feel or odd itch
i do get discharge sometimes either clear (normal) or thicker white-
just got a culture but doctor thinks its fine
and im sure i dont have an infection

and your right about becoming obsessed thinking its infection- especially when there are people out there giving false info!

again thank you


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Me too!

Post  grassy on Sat Jul 16, 2011 5:22 pm

Hi there Melissa, me too. I'm cindy. I am the same as you. It all started with a antibiotic sulfa type medicine. That went into a yeast, and the burning never left. I treated mine with clotrimozole and nystatin. Then tons of diflucan. It seems to respond somewhat to the diflucan. What the heck is this? what caused it, the meds, the treatments, the original infection? Every time I get a test its comes back neg. Course i have seen three or more doctors and i cant get any of them to culture or test for yeast. Its extremely frustrating! somedays i see red splotches where it burns, the next day it looks great. I am obsessed with thinking its an infection. But it may not be. cindy

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good news

Post  Melissa777 on Sat Jul 16, 2011 6:46 pm

just wanted to share 1) Im not itching or burning- yay the estrogen cream is working 2) got my yeast culture, bacterial culture, and BV cultures back- all negative NO INFECTION!! yay

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