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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

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 …

Comments: 10

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: 1

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 …

Comments: 6

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: 1

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). …

Comments: 0

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


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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

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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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