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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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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 here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

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: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Pregabalin/gabapentin

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Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 6:53 pm

Hi all,

Quick question - have any of you had any success using pregabalin or gabapentin to treat vestibulodynia? My gynae wants me to go on pregabalin but I only have localised provoked pain and can't find any evidence to suggest it works for this. I'm not prepared to go on a drug with side effects if it's never worked for anyone!

X

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Re: Pregabalin/gabapentin

Post  Alana3 on Tue Feb 18, 2014 7:38 pm

I used it for provoked but it didn't work for me but you don't know until you try. You can always get off it there shouldn't be lasting side effects so once you wean off you should be OK. But if it works that would be cool.

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Re: Pregabalin/gabapentin

Post  alessandria on Tue Feb 18, 2014 8:55 pm

The only clinical trial examining pregabalin for vulvodynia was discontinued due to low enrollment, so there are no real studies on whether it is effective or not (there are anecdotal reports of people getting better on it, but mostly in the case of generalized and unprovoked). As far as gabapentin goes, there is a multicenter trial underway right now in the US to see whether it is effective specifically for provoked vulvodynia. There is evidence to suggest it works well in people with generalized and unprovoked vulvodynia, at the very least. However, unprovoked and provoked are thought to be caused by different mechanisms, so what works to treat one might not help the other. There just isn't a ton of data, which means it might work, it might not. Both of those drugs have been under a lot of fire lately for not actually being helpful in a ton of different pain disorders, despite prevalent off-label use. Doctors have been prescribing them for plenty of things under the rationale that you never know until you try, but it has ended up hurting people. So...a lot will come down to whether you feel like its potential risks are worth it, and that's a personal call.

A question, how has physio been going? Did you end up getting botox? I think as long as you have noticeable pelvic floor dysfunction, I'd continue working on that -- it DEFINITELY can be a huge cause of provoked pain in particular, and it's hands down the best route to go with if side effects are a big concern of yours. If you are not super concerned about side effects, then the drugs could totally help out and should be up for consideration. Good luck!!

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Re: Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 9:26 pm

Hi! Yeah the gabapentin study came up in one of my searches, but god knows when we'll see the results of that one! As for the Botox, I didn't go down that route in the end, my new gynae doesn't seem keen on it. But I'm certainly keeping my mind open to it. As for the physio, I've been using a biofeedback machine and dilators since October and haven't noticed any change in my vestibule pain, even though my resting tone in my pf muscles has gone down. I'm still unable to relax the pf muscles when I'm thinking about something else though so maybe that's the problem. I'm reluctant about gabapentin and pregabalin because of the side effects, however I would be prepared to try topical gaba/pregabalin if I could get it prescribed in the UK. I'll be asking my gynae at the next appointment if it's an option.

Rose86

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Re: Pregabalin/gabapentin

Post  JemimaSurrender on Mon Mar 10, 2014 7:12 pm

I used Pregabalin for about eighteen months I think, and for a decent portion of that I did seem to be considerably better and sex was almost bearable, but it did return eventually. I am now on Gabapentin, and have been for about six months and have had no success so far!

I did see a consultant today and he said they rarely work for the kind that I have as it's for nerve pain rather than provoked. Another success for the NHS then, thanks guys!

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Re: Pregabalin/gabapentin

Post  Rose86 on Thu Mar 13, 2014 10:41 pm

Hi Jemima,

You say the pregabalin worked for a bit - do you have localised provoked pain of the vestibule or something else? Also how did you find the side effects and also coming off it at the end? x

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Re: Pregabalin/gabapentin

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