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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 …

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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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Has anyone diagnosed with Vulvodynia also have Urethral sensations after voiding?

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Has anyone diagnosed with Vulvodynia also have Urethral sensations after voiding?

Post  JS007 on Mon Nov 16, 2015 4:43 pm

Hi, I have been suffering with what appears to be Vulvodynia after 5 months of not knowing what is going on down there. I am currently on Amitryptiline 30mg, started on 10mg. I have been referred to GYNO (NHS) and am back for another appointment with them in due course. The symptons at the start seemed to be urinary - felt like I needed the toilet more often? funny sensations down there after going to the toilet, initially felt like pelvic muscles would not settle down afterwards. like many of you the GP thought it was lots of different things including Overactive Bladder, UTI and even thrush! I have had the aching, burning sensation, soreness - but no visible signs of anything. I would be keen to know if any one has experienced the discomfort with Vulvodynia and the Urethral opening - especially the funny sensation after voiding? thanks!


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Re: Has anyone diagnosed with Vulvodynia also have Urethral sensations after voiding?

Post  PainBlogger on Mon Nov 16, 2015 5:03 pm

Yes, a lot of my pain seems to be urethral in origin and triggered by voiding. My problems started with a concurrent UTI and thrush last year and although the infections are long gone, I've not been right since. I also have trouble with bladder emptying. It does empty fully, but not in one continuous stream so I have to stay on the toilet for a few minutes to make sure it's all emptied. I get days where I feel like I need to pass urine very frequently although I am able to hold it because sometimes I know there can't possibly be much urine to empty. I get pelvic floor muscle pain and the muscles are hypertonic. I'm currently on duloxetine for it and having acupuncture. I had quite a few sessions of physio and that did help reduce the frequency that I need to void my bladder.


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Post  Jo44 on Mon Dec 14, 2015 7:07 pm

Hi JS007

My problems started in Nov 2014, with a UTI, then it felt like it was still there even though samples came back negative. After about 3 weeks of feeling like I still had it and courses of antibiotics etc I then developed burning and soreness on my vulva.

I got put on Amitriptyline initially by the GP but by Feb of this year and increasing to 60mgs she decided to refer me to a Gynaecologist. I saw him that month and by then the burning had subsided but I had pelvic discomfort, urethral discomfort and soreness in the vulva. He wanted me to reduce the Amitriptyline and start Lyrica/Pregabalin at 150mgs a day. By April I was still having urethral discomfort and a feeling in my urethra like I still needed to pee even after going. He decided to take me into hospital and do a biopsy of the vulval tissue and a urethral rigid Cystocopy and dilatation. This did help so maybe it needed stretching a bit!

However, I have had many weeks in between where I have had no V paid at all and it's been amazing and then for no reason it starts up again, which is depressing! I'm in a flare again right now! My Gyni now isn't sure it's Vulvodynia anymore so I'm feeling very lost and will be ringing my GP tomorrow to discuss it! I'm still on Amitriptyline and Lyrica, although I did try and reduce the Lyrica as if gone upto 225mgs for about 6 weeks before getting bad fatigue, foggy head, headaches, back tension etc! We thought it might've been the Lyrica and although those things got better my soreness is bad again! Oh what to do!

So sorry it's long winded Hun.


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Re: Has anyone diagnosed with Vulvodynia also have Urethral sensations after voiding?

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