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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

when I loved myself enough. ...

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when I loved myself enough. ...

Post  zarli on Sun Jun 08, 2014 10:51 am

I have just read some recent posts which brought me back to my darkest days...I drove myself to an after hours clinic 7.5 years ago telling them I wanted to not be here any more because of this shit chronic pain disorder, a lady doctor saw me she was my 6th doctor she diagnosed me and prescribed amiltriptilyn. I started at 10 mg and slowly went up to 35mg. It saved my life. I am here for any one of you even if you think you can't say what you are thinking. No one understands this unless they have it. Neuralgia pain is often called the suicide pain. BUT as much as its how we may feel there is help and long lasting pain relief. Typical of us women that we have to sometimes ( often) find our own support and way ahead. I have learnt to say in the mirror every day WHEN I LOVED MYSELF ENOUGH. ....I WILL ALWAYS TAKE CARE OF MY MIND AND BODY BECAUSE I AM WORTH IT.


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Post  Caropes on Sun Jun 08, 2014 1:22 pm

Thanks Zarli. Very well said Smile


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In need of a rant!

Post  virgo33 on Mon Jun 16, 2014 2:03 am

Ok so I am new here but have been suffering with vulvodynia for a little over 2 years. I have seen 4 docs., taking amitriptyline 50m per night, fish oil/daily, magnesium/daily and coq10/daily. My meds for the most part keep my pain at a level 1-2 the majority of the time, which at this stage is tolerable being that my pain began anywhere between 5-10 and was unable to sleep most nights. I am excited that I have found this site. When I have been to the dr. I say it is really hard and I feel alone without support. I'm sure you know the response I get"Yes I have other patients that say this too". But that is where it ends! no support group name, no 800#  no website. I can tell my sis and bff but they can only relate so much. They don't understand that this really does affect my everyday life and that I have to put on a happy face because I cant just go around telling people when they ask how I'm doing that the truth is my vag burns all the time and when they say they can't believe i'm single or that some one hasn't just swept me off my feet I want to say oh they could but then they wouldn't be happy with their sex life. Yes I am in need of a rant!
Thanks for being here!


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Re: when I loved myself enough. ...

Post  Caropes on Mon Jun 16, 2014 12:12 pm

Hey Virgo33, I sent you a PM.


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Re: when I loved myself enough. ...

Post  tinkerbelle2 on Mon Jun 16, 2014 10:03 pm

Sending love  I love you I love you I love you 

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Re: when I loved myself enough. ...

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