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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

Vulvadynia

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

Hello!

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


I was diagnosed with Vulvodynia at 13 years old.

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I was diagnosed with Vulvodynia at 13 years old.

Post  spencerlily on Wed Jul 06, 2016 8:29 am

My name is Spencer Lily Hastings, and I am 13 years old. I was diagnosed with Vulvodynia about 6 months ago, but have been feeling intense pain since I was about 9 or 10. My condition is pretty bad I suppose. I feel intense pain sometimes without even wearing tight under wear or pants. Mainly I feel pain when I wear shorts or pants with high seams, or any normal underwear. I am unable to wear tampons, and feel tremendous pain even when sitting up straight. I have traveled to other states to see doctors who may be able to help, and am now moving with my family to a huge facility so that I can get "fixed". I am on this website hoping to find others like me so that I may feel more comfortable about myself and my pain.

spencerlily

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Join date : 2016-07-06

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Re: I was diagnosed with Vulvodynia at 13 years old.

Post  emalita on Wed Jul 06, 2016 12:28 pm

I'm so sorry to hear that you've been in pain since such a young age. Unfortunately there are far too many ladies with the type of provoked pain that you describe, so you are definitely not alone.

What treatments have you tried so far, and what facility are you seeking treatment at next?

I hope you find relief soon Very Happy

emalita

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My treatments so far

Post  spencerlily on Thu Jul 07, 2016 2:13 am

I have tried many topical and phsycological treatments so far, but my next treatment will be going under anesthesia for steroid shots. I have gone under anesthesia before, and will likely continue for about once a month until some results are seen. I am not sure of the new name of my new facility, but I do know that it is a place where young eurogynocologists study and learn to become doctors in my area, so that they will be able to study some one at such a young age like myself.

spencerlily

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I am cured of Vulvodynia

Post  angelique2016 on Tue Aug 16, 2016 12:32 pm

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as it has the same ingredients, but the ointment protects the skin more when you wee, rather the cream wont stay on as long, but if used just before bed it will mean you will sleep and not have to pee) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. (Must not use ointment in the morning, as it will cause more pain due to friction)  I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain if taken in low level doses (highly levels are for depression), and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. I have been cured for many years now.  Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever. I tired everything, so many creams, ointments, lotions, you name it, nothing worked.  It was originally caused by a harsh medicated body wash.  Just use sorbolene or something like that on your body, and dont wash with harsh soaps or body washes.  Just mostly water is fine, and dont sit in hot baths.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you, or go onto ebay and buy the cream.  It takes time to heal, 3-6 months but you will get there, just be patient.

Hope this helps you sweetheart you are too young to be suffering like this!  Get well soon.  Do a search in ebay for ADVANTAN-CREAM-15g-OINTMENT-Itching-And-Irritation-Of-The-Skin-in-Eczema it is there, being sold in Germany, and they will ship internationally.

angelique2016

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Re: I was diagnosed with Vulvodynia at 13 years old.

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