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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 …

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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 …

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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


Three years down the line .....

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Three years down the line .....

Post  Jacky51 on Thu Nov 14, 2013 11:46 pm

Hello everyone

Three years ago I developed chronic burning pain which came on literally overnight. On a scale of 1 - 10 it was nearly always at a 9. After scouring the web, finding this website and seeing a gyni I knew I had vulvodynia. I was beside myself, was in the depths of depression and unable to work. My gyni prescribed lidocaine and amitryptoline, both of which didn't work. I also tried acupuncture but that wasn't much help either.

I finally decided to see a private pain consultant. O my he was my saviour - finally I had found someone who could sympathise and understand my agony. He immediately put me on 150mg of lyrica, kept me on the amitryptoline and gave me a supply of tramadol for emergencies (I only ever needed to take them once). Within 48 hours the pain had all but gone. In my second week he increased me to 300mg and I had no pain at all. In total I was on 300mg lyrica and 50mg ami.

Unfortunately I did have some side effects such as a dry mouth and weight gain but this was a small price to pay.

I was petrified that if I came off the meds the pain would come back. however, with the support of my gp (who incidentally admitted she didn't know much about the condition and was as pleased as I was that I had found something that worked), I have weaned myself off the lyrica over a long period of time. I am still on 10mg of ami and that is only because it helps me sleep!

Thankfully the burning has not returned. However, now that I know that something has worked for me it is no longer a fear, if it does come back I'll be straight back on the pills - let's face it most people have to take some form of medication for their ailments.

I really would encourage anyone to give it a go, it might work for you too. My heart goes out to you all, I honestly don't know how I got through those initial months I really had got to the point where I had virtually given up. I haven't been on this site in a long while and was really surprised to see how much it had grown in numbers, there are so many of you all suffering x

Jacky51

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Re: Three years down the line .....

Post  Leslieg on Fri Nov 15, 2013 1:59 am

Jacky, thanks for posting! It is so great to hear success stories . I'm glad you are well! God Bless xo

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Re: Three years down the line .....

Post  Delilah1 on Sun Nov 17, 2013 3:16 am

Thank you for returning to the forum and sharing your success story!! So glad you are feeling better!! Can I ask if sex was painful for you? Has your sex life returned to normal?

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Re: Three years down the line .....

Post  Jacky51 on Sun Nov 17, 2013 11:12 am

Thanks for your well wishes. If I am honest I was scared of having sex in case the burning pain came back. My poor husband put up with a lot, but things are back to normal and not at all painful now.

Jacky51

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Re: Three years down the line .....

Post  tinkerbelle2 on Sun Nov 17, 2013 9:51 pm

Hi jacky, I didn't even realise the site has been running that long I only joined a couple months ago. If only I had found it sooner. An amazing way to share and support each other. So glad to read your story! I was going to mention lyrica to my gyno tomorrow as quite a few women have mentioned it. What were your symptoms? So happy for you!
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Three years down the line .....

Post  Jacky51 on Tue Dec 10, 2013 11:28 pm

Hi tinker belle did you speak to yr doctor about Lyrica.  In terms of my symptoms I had the most excruciating burning pain, at times it felt like someone was grabbing hold of my vagina and at others it was really painful inside as if I had inserted a tampon badly.  On a scale of one to ten I was always around a 9.  It really is the most awful condition for anyone to have, especially as most people don't understand and it's embarrassing to talk about.

Jackyx

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Re: Three years down the line .....

Post  mary jane on Wed Dec 11, 2013 11:41 am

Hi Jacky, loved hearing your story as it gives me hope. I also take 50 mg ami and I shall beg for some Lyrica, if only my stupid GP would put her brain to contribution. I hate GPs so much, in my country GPs are worth s... we only see the specialists.
anyway, so amazing you are cured !! yey loved reading this !!

How long were you on the lyrica??

thanks
xxx
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Re: Three years down the line .....

Post  Jacky51 on Wed Jan 01, 2014 11:51 pm

Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way. I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

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Thanks

Post  907hopeful on Wed Jan 08, 2014 6:08 am

I can't tell you how great it is to hear success stories. I am just in the beginning stages if this roller coaster and still working to get properly diagnosed. I started with skin irritation which has somewhat disappated and I have moved on to stinging, burning and some days (or weeks) pain. My pain levels are not at a 9, but this problem has really taken an emotional toll on me. Your story gives me hope. I will make sure to add Lyrica to my list if meds to ask about next week!

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Lyrica help please

Post  Jo44 on Wed Nov 18, 2015 9:28 am

Jacky51 wrote:Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way.  I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Hi Jacky

I have messages you privately a couple of times but no joy! I was wondering how much you reduced Lyrica each time & did you struggle with any withdrawals please?

I'd appreciate a reply?

Thanks


Jo x

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pain and burning?

Post  amyhp on Wed Nov 18, 2015 8:06 pm

Jacky,
Did you have a sore pain feeling along with the burning? I have tried Lyrica in the past and it didn't work. Do you think it was the combination of the amitriptyline and lyrica that helped?

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Re: Three years down the line .....

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