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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.

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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 …

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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 …

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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

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New member - Glad to find this connection

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New member - Glad to find this connection

Post  Laura on Wed Aug 24, 2011 7:41 pm

I discovered this site yesterday and like most people here, feel so reassured that I'm not the only person in the world trying to live around this pain. My symptoms started after I was diagnosed with interstitial cystitis almost 20 years ago. Since then, the I.C. smptoms have abated but i have Vulvodynia flare-ups for no apparent reason lasting from a few days to months. So many comments here have resonated with me. Did I do something to cause this? How do I prevent my life from revolving around this? How do I stay engaged in the world when I just want to curl up, not talk to anyone, and stop hurting? Have seen many doctors, received varying diagnoses. Tried lidocaine ointment, biofeedback, diet changes all with no effect. Exercise helps mentally, but when I need it most it's the last thing I feel like doing. I'm 52, live in Arizona. This group feels like a lifeline.


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Age : 58
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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Aug 25, 2011 11:56 am

Hi Laura and welcome. Hopefully you'll find some interesting threads on here and feel free to discuss anything and everything with us all, we're like one big family on here!

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Re: New member - Glad to find this connection

Post  Zazu on Fri Aug 26, 2011 12:11 pm

Hi Laura and welcome Smile
I hope you find lots of support and advice on here - and that it helps you feel connected. I identify with a lot of the questions you mentioned, too. In terms of what you've tried - it doesn't sound like you've taken the 'drugs' route yet. A lot of women understandably are hesitant to start taking amitriptyline, gabapentin, etc. etc. One thing you might want to talk to your doctor about is a compound cream where they put one of the nerve calming drugs into an ointment or gel. Right now I'm using a 6% gabapentin, 5% lidocaine in diffusimax gel It's a good intermediate option.
Best to you! Be well!


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Katie + Laura

Post  Aussie on Mon Aug 29, 2011 3:17 am

Could you please tell me the base that is in your cream. Is it compounded with something non irritating like parrafin wax? I want to try this but not yet available in Aus. My doc said he will do up the script if I can find what base others are using. I also am interested in the Ami/Balofcen (sp) gel. Nerve med/muscle relaxant compound.

Laura, you have come to the right place. I suffer with IC too. How did you resolve your symptoms? at the moment I am doing IC diet, oxytrol patch, heaps of water and heat and have ordered cystoprotek and prelief for meals.

Glad to hear this part has subsided for you (remission?! Smile) dealing with both IC and V is tough, very tough!



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Re: New member - Glad to find this connection

Post  thiemli on Wed Sep 21, 2011 6:39 pm

I am new here too and am looking to see if anyone had success with the neogyn cream? I have seen several docs and all say to stay away from all creams. I have tried them all i feel like. I do think my symptons subside when I use nothing but sometimes unbearable. I am a mother of 4 small children and feel like i can't take care of them when I am in pain. It is terrible. I know it is worse for some of you. Mine (vestibulitis) comes and goes. I actually had it gone for over a year and a half and it returned. I thought the birth of my children is what brought it on and when pregnant or nursing i would get inflamed. AUUUUGGHHH. just looking for something to survive right now. Surgery is not an option with my small children that is my doctors next step.

Please advice if you have used neogyn or found any temporary relieve


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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Sep 22, 2011 10:10 am

We've actually got some ladies trying neogyn at the moment but I don't think any of them have reached the end of the recommended trial period yet, I'm sure they'll update us all when they do so keep coming and checking.

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Re: New member - Glad to find this connection

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