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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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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?

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new member

Post  JW2012 on Sat Dec 15, 2012 2:54 am

Hello everyone!

So happy to have found this forum. I have hardly told anyone what I am going through and when I do, no one quite gets it.

This whole thing started almost a year ago now. I have never told anyone, even my doctors, how it happened. I went on a trip to Vegas, drank to much and was sexually assaulted basically. I was in some pain down there like the man injured me. The next day I went swimming and fell asleep in my swimsuit, woke up and felt this awful awful burning. I was sure I was getting herpies.

I became obsessed with checking myself all of the time. The pain was unbearable so I knew there was something wrong. I went to my gyno, in tears and she was a bit rude. Said herpies was not a big deal at all. Well I thought if it feels like this it is a HUGE deal. She checked me out and said she was sure that was not it. I was treated for a yeast infection like many others. She did a test for herpies anyway, both swab and blood because my whole vulva looked raw and irritated. It came back negative but the pain came back in full force.

I went back to see another gyno because mine was unavailable. So happy because she was a life saver. She examined me, had another gynecologist look as well as a dermatologist. They could see that it was very irritated and that it didn't look like an STD. Tested me again and came back clean. Ointments did not help so they sent me to a pelvic pain clinic that is special to my hospital. So blessed and lucky to have had these specialists at my local doctor's office.

Now I am going to PT with a therapist that is amazing. She also suffers from similar issues so she actually understands what I am going through. They say my muscles are extremely tight. They aren't sure why. I assume it was the injury mixed with chlorine and possible yeast infection from swimming. Not quite sure. Maybe a mix of things. The PT is not relaxing the muscles as much as hoped so I am going for a botox treatment in january. My doctor also suggests a nerve block but I am nervous for that so just going for botox first. Has anyone had either one? What was it like? Did they put you to sleep?

Overall I am happy because the pain i felt for the first 4-5 months was unbearable. I thought about and contemplated suicide daily. My work and school suffered. I am in a much better place now. It still is irritating and the pain comes and goes but nothing like what i originally experienced. I have a fear that it may one day return to what it was, especially if I attempt to have sex. I guess I have to take it one day at a time and deal with that day if it comes.

Sorry this is so long! Needed to share my situation with someone.


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Re: new member

Post  cba321 on Sat Dec 15, 2012 5:21 am

I'm glad to hear you have found some good help.

I have done the botox treatment. I had my injection in Aug this year. It has helped heaps, the muscle pain is gone, i'm just left with nerve sensitivity. I have had to do a lot of dialator work post the botox, but I am now up to the largest dialator 45mins a day. Whether my ability to use that large dialator post botox remains, we will see!

I was put to sleep for the injections, it was painful for a day and then it was gone. It felt very weird to run for a bit, but that is now gone as well.

Overall has been a good experience so far...


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