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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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: 4

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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!

maryjane

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Re: new to the group

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

Hi Maryjane,

Welcome!

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
Vicki

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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,
noni
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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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Re: new to the group

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