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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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

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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Join date : 2016-09-19
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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