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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 …

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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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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

new to the group

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new to the group

Post  maryjane on Fri Mar 18, 2011 9:59 pm

Hi everyone

Although I have never been diagnosed with vulvodynia I know I have it. About 5 years ago i just woke up in the night with dreadful burning and pain down below. I eventually went to my doctor who agreed I may have it and started me on Amitryptilene. It took a couple of months to work but eventually the pain went and I haven't had it for 4 years. I haven't been taking the medication so thought great I am cured but no I have had a really bad flare up again and I am feeling suicidal I think I will start taking the Amitryptilene again and see if it goes away. I just don't think I can cope with another year or so suffering this dreadful pain. None of my friends know what I am talking about they are lucky and then I think why has this had to happen to me. It is nice though being able to share my feelings with other sufferers. Thanks for listening - just feeling down at the moment tomorrow is another day!


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Re: new to the group

Post  Mouse on Sat Mar 19, 2011 12:05 am

Hi Maryjane,


It's really easy to get down, this is a shite condition and just wears you down. Be kind to yourself. Try to find something you enjoy doing and have something to look forward to each day.

This is a whole body process so taming a rampant mind is essential. Have you got a therapist? Most of us do, it's a really good idea to find someone you can unload to. Other people just don't get it. If you haven't had a chronic pain condition how could you know what it's like? I get some empathy from a couple of my friends, others just stare blankly or say things like I thought you were better now... hmm this is because I just grin and bear it. There was a really good blog on here about that, I'll have a crack at finding it.

It's really good that the ami works for you! Try to do simple feel good things. Sitting in the sun, try to socialise, meditation or some exercise if you can. Things that give you the natural feel good chemicals. I've completely revamped my diet.... UGH! And believe me I have the least willpower of anyone I know.

I find getting active to find a cure gives me a great focus. Although some days I just wallow in it and that's ok as well.

Can you recognise a trigger? Have you had more stress in your life?

There are a wonderful group of ladies on here.

Take care


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Re: new to the group

Post  noni on Sat Mar 19, 2011 4:40 pm

Hey Maryjane,

I cant relate a bit to your story....

Today I literally called up my pharmacist in tears because my Ami prescription is running out and I wont be seeing my doc for another couple days!!!! I need better organization and time planning skills!!!! DUHHHHH

This is so shitty.

Take care everyone,

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Re: new to the group

Post  Sebby (Admin) on Sat Mar 19, 2011 8:36 pm

Welcome to the forum Maryjane

If you had sucess with the Ami before then deff try it again. It may take a while before it works as it has to build up in your system but keep perservering

I couldnt go on Ami as I am currently on Citalopram for anxiety but have reduced my dose to 10mg so will soon be off it. At least then I can try Ami. Im currently taking Pregabalin. Its been about 5 weeks or so and the flare ups seem to go quicker so I am remaining hopeful

I have also felt suicidal and have just not wanted to go on. These feelings pass as you said tomorrow is another day. I have found the ladies on this forum really lift my spirits.

We also have a secret facebook group for members of the forum so if you are interested inbox or email me


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