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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV


Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico


I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Hi,a newbie here who's at the end of her rope :(

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Hi,a newbie here who's at the end of her rope :(

Post  deprived of sanity on Sun Jul 08, 2012 8:44 am

Hi everyone,
I'm not sure if I even have this but this forum seems like a good place to start. I have had this debilitating condition for 1 year that started off as burning everywhere,now its localised to two areas that range from burn to itch to irritation depending on what day it is,but it is always constant.. Ive had numerous STD checks,spent thousands of dollars on different gyno's.dermo's and other specialists and I still don't have a diagnosis. A recent biopsy after 1 year of dealing with this revealed Lichen Simplex Chronicus but thats about all. I have been suicidal with this condition and the pain associated with it.When i get thrush it makes the situation all the worse. I feel like I never want to have sex again,I've lost any desire for for it.My condition is irritated by excersise,friction,hair growing back there,sweat,sex,any contact Sad
I am dying for the day when I can wake up and not feel vulva pain.Just writing these words is making me cry.It's not something you can discuss nor want to with people.
There's even been implication by gp's that it could be psychosomatic.Are you kidding me?? I'm currently taking antidepressants,steroid tablets and using Advantan Fatty ointment morning and night. I'm not seeing much improvement. Does anyone know of any groups in Brisbane that exist? I'm 36 and feel like I'm going crazy with this.
Is there any hope for people like me?

deprived of sanity

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Join date : 2012-07-08
Location : Australia

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Situation similar

Post  jmcmil on Mon Jul 09, 2012 2:57 am

Hello, Oh my gosh..I can totally relate to what you just wrote. I am 36 and will be 37 next month. I have a constant burning down there and everything can aggravate it too, from hair growing back, exercise, walking long distances, wearing underwear, etc..you name it. I was also diagnosed with Lichen Simplex Chronicus, as well as vulvodynia. I don't know the difference and to tell you the truth, I don't think the doctors do either! It has been very frustrating and debilitating. I have had this for 7 months and give up hope all of the time. Today has been a very low day for me because the burn has been worse today for some reason. I constantly don't know how to plan my day because of my pain/burning. I hate wearing clothes. I am on a low dose of Amitryptaline, however when I increased it to 75 mg, it didn't really help so I lowered the dose back down. I like you have spent numerous of dollars on doctors, tests, products, prescriptions, you name it to still be miserable and suffering. I read where you are using Advantan Fatty ointment. What is that? Please don't feel alone and feel free to reach out to me anytime. I'm glad to find someone I can relate to, however pray that we find the relief that we deserve!

Take Care,


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there's always hope

Post  toosore on Thu Jul 12, 2012 11:46 pm

You are certainly not alone - and your problem is not in your head! I can relate to what you are going through - I have the same troubles - bothered by my own pubic hair touching me! And don't even mention peeing and wiping - ouch! I've had this for years and found a few things that help. Amy Stein's book Healing Pelvic Pain is very good - well worth getting. Narcotic pain killers help me, but I limit their use to extreme flares when I feel like death is preferable. I figure then that it's okay to take one pill, rather than the whole bottle! LOL! I use hydromorphone, and I am very sensitive to meds, so the lowest dose of 2 mg is enough to help. I take it with some tylenol and coffee, which helps to increase the pain killing effect and stop the "high" feeling. I was told by the vulvar specialist that I should treat the pain like any other pain condition, with pain medications, such as ibuprofen or tylenol. I find those OTC products too weak now, so I use stonger prescription meds as well. I have found that any kind of cream usually just burns more.

When this condition gets bad, it is life altering. But it doesn't need to be life ending. You need better pain management from your doctor. And do not doubt yourself - it is not a psychological illness - it's psychologically distressing, but not caused by any sort of mental problems. Studies have confirmed this. Hang in there, and keep seeing the doc until you get some relief. Maybe a referral to a pain specialist, if your doc doesn't want to give you anything stronger. Good luck. Hope you find some help soon.


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Post  grassy on Sat Jul 21, 2012 7:53 pm

At one point i was told i had lichen planus. So after googling that, i was totally shocked to read that a couple of blood pressure medicines i was on were known to cause it. One being HCTZ. google your medicines, google the lichen simplex along with any medicines you may be on. It may be a long shot, but what the heck. worth a try. Now a days you never know. cindy


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Re: Hi,a newbie here who's at the end of her rope :(

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