Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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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


Hello, newbie here

Vulvodynia Support :: New Members

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Hello, newbie here

Post  EviE°Bee on Wed Oct 02, 2013 12:41 am

Hello, I'm Evie.

I was diagnosed a couple months ago, pain originally started in 2008. Currently taking Gabapenton 300mg.

I'm lonely and frightened. Meds are not workin'.

EviE°Bee

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Re: Hello, newbie here

Post  zarli on Wed Oct 02, 2013 1:16 am

Hi Evie,
Every time I read a post when some one says they feel frightened and alone I wish I could give them a big hug!! It is frightening at times and very lonely, Ive suffered for 6 years but have had much relief for long periods of time. You will find something that works for you. You are not alone and any time you like please feel free to contact me. Read as many posts as you can the women on here have so much great advice and treatments to try. Smile 

zarli

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Re: Hello, newbie here

Post  EviE°Bee on Wed Oct 02, 2013 3:24 am

Thanks so much babe. Im glad you have found relief. Muah!

EviE°Bee

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Re: Hello, newbie here

Post  tinkerbelle2 on Thu Oct 03, 2013 2:30 pm

EviE°Bee wrote:Hello, I'm Evie.

I was diagnosed a couple months ago, pain originally started in 2008. Currently taking Gabapenton 300mg.

I'm lonely and frightened. Meds are not workin'.
Hi Evie.

You have had this a long time! Poor you Sad *Hugs*

I was also on Gabapentin 300mg but had to come off it as it was making me nauseous and giving me headaches! I was on it for about 3 months then gave up as it wasn't doing a thing.

I am lonely and frightened too. Even my mum, who is a nurse and has been very supportive, sometimes doesn't understand how bad this is and thinks i'm being dramatic!

There are still many options to try so don't despair! Are you in the UK/US/ elsewhere?
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tinkerbelle2

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Re: Hello, newbie here

Post  EviE°Bee on Thu Oct 03, 2013 3:16 pm

Im in the US, California. The Gaba i starting to give mw headaches too. I wanted to try Lyrica but My insurance does not cover it. I'm kinda confused on what Meds to try, and kinda worried about long term effects.

It sucks to not have anyone to relate to. I don't know anyone who has VV personally. My mom, my sisters, friends.... they dont know what to say, unable to relate.

Poor babe, your mom may be frustrated because she can't help you. I wouldn't wish this on anyone.

::hugs:: back at ya babe.

EviE°Bee

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Try Lyrica

Post  Donna84 on Thu Oct 03, 2013 9:35 pm

Try Lyrica, try to buy it somehow...it helped me! And the dose of 75mg only! So, it will not hurt to try. I never tried gabapentin, but Lyrica gave me no side effects at all...so... Smile I really hope this med can help other women as it helped me.

Donna84

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Re: Hello, newbie here

Post  tinkerbelle2 on Wed Oct 09, 2013 7:46 am


Hey evie, how you getting on? I agree that you should try lyrica, it seems to help a lot of women.
Hope you're okay lovely! Xx

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Re: Hello, newbie here

Post  EviE°Bee on Wed Oct 09, 2013 9:44 pm

Hey TiNk, I'm always up and down emotionally, some days positive, some days negative. I will definitely look into getting my hands on some Lyrica.

How are you doing babes?

EviE°Bee

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Re: Hello, newbie here

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