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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 1

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: 8

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 …

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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: 4

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 …

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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

FB secret Vestibulodynia/vulvodynia groups

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FB secret Vestibulodynia/vulvodynia groups

Post  LuLu81 on Mon Sep 19, 2016 6:13 am

Hi all,

I'm new here and was searching for 'secret' FB page for Vestibulodynia. I've seen a few mentioned on threads here but I am unable to PM anyone until I have been a member of the forum for a week. So will contact someone next week Smile

Second to this though... does anyone know of any support FB groups for our partners? I found one here (facebook.com/groups/partnersofvulvodynia/) ....that's a CLOSED group, but closed groups still show up on your friends 'suggested pages' and I don't think my husband would be keen on joining one that may potentially display that to his mates. Would love to know if there are any secret support groups for men.

Thank you all...
LuLu Smile


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Location : Australia

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Re: FB secret Vestibulodynia/vulvodynia groups

Post  Suzie on Wed Sep 21, 2016 3:41 am

Hi l'm new to the group and have been diagnosed with Vulvonydia and Vestibulodynia. I need some serious advice on how to manage this.. can you help please?


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Re: FB secret Vestibulodynia/vulvodynia groups

Post  LuLu81 on Thu Sep 22, 2016 6:19 am

Hi Suzy,

I'm new to this forum too but unfortunately I have no solid advice yet (even after having Vestibulodynia for 12 years)! Still trying to figure it all out myself. There was a huge portion of that 12 years that I just gave up trying anything, had kids (painfully)... but now it's really affecting my marriage so I need to get this issue sorted.

I have just started looking through the topic posts in "Vulvodynia Support :: Celebrating the Positive" on this forum. You may find advice here. There are a lot of success stories! So many causes of this awful condition mean such a varied response to try different things. I'm currently on a low oxalate diet, taking probiotics, fixing 'leaky gut' etc... seeing if mine is 'gut' related. But I think I'm going to overhaul my shampoo/conditioner/body wash now.

All the best for you finding a result soon!


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Re: FB secret Vestibulodynia/vulvodynia groups

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