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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


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Post  sadone on Sun Jan 17, 2016 4:12 pm

Please Please watch this piece on youtube and flood the comment section. The anchor on this program has a despicable reaction to vulvodynia. Share with any groups. Let's get this youtube removed.



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PLEASE respond

Post  sadone on Tue Jan 26, 2016 12:34 am

We need to take action. contact the nva. www.nva.org. let them know that you want this youtube removed. i worry that it is going to make women with V despondent. Please take action. We only have each other.

We have to advocate for ourselves. Personally, I was devastated by the video. But it is inaccurate and insensitive.

If we don't advocate for ourselves, then nothing will happen to help us.


If this vid causes one suicide, we only have ourselves to blame for not acting.



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Post  meelie on Tue Feb 02, 2016 3:22 pm

I disagree. I think that there should be more media coverage of this horrid curse. Maybe if there were more on it and the world learned that it exists there will be more work done to fix it. I don't think any one with this curse could get anymore despondent that they already are. In fact it makes me feel a little better about it that my curse is being talked about in the real world and that now maybe people will believe me when I have the courage to come out and tell someone about it. I have people who roll their eyes or otherwise acts like they think it's made up or all in my head. So I am glad it is out and should be out more. "coming out" is the only way to get things done. Letting the rest of the world know what is happening is the only way to changes made. Maybe it will get more doctors to do research so more of us can get help in our home towns instead of having to travel hours to someone claiming to know about. Those are my thoughts.


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Thank you

Post  sadone on Sat Feb 27, 2016 6:35 am

Thanks, Meelie for your reply. I agree that it should be talked about. What I didn't like about the video was the guy saying that he would not date someone with V and ninety nine percent of guys wouldn't either. And that he had no advice to offer.

That was insulting. And the comments were horrendous. People were making fun of the condition.

That was the part that was cruel and showed no empathy. Anyway, it drove me over the edge. I had to make an appointment with my therapist after seeing it. It really upset me terribly. I worry that I will be alone forever bc of this. And after a break up with my bf this made me feel like giving up on life even more.

Anyway, I wrote to TYT and my therapist is going to do the same. Just talking about it now is making me really upset. Sad already I am having suicide ideation... this youtube made me worse.


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