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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 …

Comments: 23

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

Comments: 0

Trying to understand:)

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Trying to understand:)

Post  senozs1 on Thu Oct 06, 2016 12:26 pm

Hello everyone, I have so many questions which I'm trying to understand myself from my own experience but hopefully some of you guys can help me understand better:)

My pain started when my boyfriend and I were having dry sex. (I was still in my underwear) I remember the burning and knifelike pain but I couldn't make any sense. After that moment, I was never able to sit down. My pain was constant and I remember the burning being soooo severe. Later on, I was diagnosed with localized, provoked vulvodynia.

1) I would sit down and after that the pain wouldn't go away. It was like a cycle, it was provoked and it would hurt for hours and then I would sit again and so on and on. Can localized pain can hurt all the time right after the minute you sit down?


I had vestibulectomy but one part of the pain didn't go away. After 3 months I had and MR neurography done. (for the pudendal nerve) My pain has always been on the left side. And according to the report, my left pudendal nerve is thicker than the right one.
So after months, I figured my main burning was due to an abscess (bartholin gland) I had the bartholin gland removal surgery and now my pain isn't as bad as before. Which brings me to my second question,Smile

2)Can a huge(size of a table tennis ball) bartholin abscess could have caused that report to turn out the way it was? Doctors told me that this report doesn't determine anything. It just shows that the pudendal nerve is problematic.

3) (I've never had sex, penetration, and that day with my ex I remember not wanting to) Can one stressful event cause pelvic muscles spasm and damage the pudendal nerve which can cause VVS?

But my burning had always been in my entire vestibule. After vestibulectomy, my doctor told me that I had way too many mast cells. Btw, I had no pudendal neuralgia symptoms other than pain with sitting. (I still can't sit very well but I'd like to believe its because of the recent bartholin surgery)

Now looking back, I'm trying to find what started all this. The burning pain started that day with my ex and it became worse each day until I wasn't able to even walk. But the first month it was more like a mild mild aching pain. Then it became so severe. Could I have tightened the pelvic floor muscles not wanting to go any further and damaged the nerves? What I don't understand is, I remember the left side being super super severe and the right side was way better than the left one.
I think I was born with too many nerve endings and triggered it that day. I still have burning but not constant. I think I have scar tissue on the right side too and it burns crazy.
I know how long this is, but I can't believe that one stressful event can damage the nerves.


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