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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


new to the group

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new to the group

Post  maryjane on Fri Mar 18, 2011 9:59 pm

Hi everyone

Although I have never been diagnosed with vulvodynia I know I have it. About 5 years ago i just woke up in the night with dreadful burning and pain down below. I eventually went to my doctor who agreed I may have it and started me on Amitryptilene. It took a couple of months to work but eventually the pain went and I haven't had it for 4 years. I haven't been taking the medication so thought great I am cured but no I have had a really bad flare up again and I am feeling suicidal I think I will start taking the Amitryptilene again and see if it goes away. I just don't think I can cope with another year or so suffering this dreadful pain. None of my friends know what I am talking about they are lucky and then I think why has this had to happen to me. It is nice though being able to share my feelings with other sufferers. Thanks for listening - just feeling down at the moment tomorrow is another day!

maryjane

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Re: new to the group

Post  Mouse on Sat Mar 19, 2011 12:05 am

Hi Maryjane,

Welcome!

It's really easy to get down, this is a shite condition and just wears you down. Be kind to yourself. Try to find something you enjoy doing and have something to look forward to each day.

This is a whole body process so taming a rampant mind is essential. Have you got a therapist? Most of us do, it's a really good idea to find someone you can unload to. Other people just don't get it. If you haven't had a chronic pain condition how could you know what it's like? I get some empathy from a couple of my friends, others just stare blankly or say things like I thought you were better now... hmm this is because I just grin and bear it. There was a really good blog on here about that, I'll have a crack at finding it.

It's really good that the ami works for you! Try to do simple feel good things. Sitting in the sun, try to socialise, meditation or some exercise if you can. Things that give you the natural feel good chemicals. I've completely revamped my diet.... UGH! And believe me I have the least willpower of anyone I know.

I find getting active to find a cure gives me a great focus. Although some days I just wallow in it and that's ok as well.

Can you recognise a trigger? Have you had more stress in your life?

There are a wonderful group of ladies on here.

Take care
Vicki

Mouse

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Re: new to the group

Post  noni on Sat Mar 19, 2011 4:40 pm

Hey Maryjane,

I cant relate a bit to your story....

Today I literally called up my pharmacist in tears because my Ami prescription is running out and I wont be seeing my doc for another couple days!!!! I need better organization and time planning skills!!!! DUHHHHH

This is so shitty.

Take care everyone,
noni
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Re: new to the group

Post  Sebby (Admin) on Sat Mar 19, 2011 8:36 pm


Welcome to the forum Maryjane

If you had sucess with the Ami before then deff try it again. It may take a while before it works as it has to build up in your system but keep perservering

I couldnt go on Ami as I am currently on Citalopram for anxiety but have reduced my dose to 10mg so will soon be off it. At least then I can try Ami. Im currently taking Pregabalin. Its been about 5 weeks or so and the flare ups seem to go quicker so I am remaining hopeful

I have also felt suicidal and have just not wanted to go on. These feelings pass as you said tomorrow is another day. I have found the ladies on this forum really lift my spirits.

We also have a secret facebook group for members of the forum so if you are interested inbox or email me


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Re: new to the group

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