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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 Thu Jan 21, 2016 10:45 pm

PLEASE PLEASE WATCH THIS AND FLOOD the video producers with comments. I have already reported this video to the NVA. We need to stand up for ourselves.

I don't know where else to post this.

But please please watch and write back to them.



Media and Press Contact for TYT network.

Peter Axtman / Danielle Fuerth

Contact the press coordinators, snail mail, and comment on the website.

If we don't stand up for ourselves, who will? We have power in our numbers.

I already have written to them and contacted the NVA.

Talking points: vulvodynia is not a rare condition. it affects 18 percent of women. the male anchor on the program's comments are despicable and cruel. Where he gets the percentage 99 percent of men will not date a woman with V? We all know that is false.

PLEASE TAKE ACTION. I will continue to post and update.


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Post  sadone on Wed Jan 27, 2016 10:18 pm

I am very upset that no one is replying to this message. When I searched for dating if you can't have sex, the above video was the only thing that came up.

This video would throw any girl into a deep depression. We must work to get it removed.

We must do something. Write to the NVA. www.NVA.org

Write to to The Young Turks network.

Technical and Member Support

TYTNetwork Support Desk

Legal Inquiries


Media and Press Contact:

Peter Axtman / Danielle Fuerth

Regular Mail and Packages

The Young Turks
6230 Wilshire Blvd, Box #140
Los Angeles, CA 90048


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Post  emalita on Sun Apr 10, 2016 11:34 pm

I'm a little confused by why you are so upset with this video. I watched it and felt that it was an open, honest, and sympathetic discussion.

The male anchor openly said that he was using made up numbers when he was referring to the percentage of men who HE believed would be turned off by the idea of never having penetrative sex again. Although it is horrible to think that this is reality, I do agree that the majority of men wouldn't choose to be in that situation. HOWEVER, there are great men out there that would find other forms of intimacy fulfilling. For women in our situation, we will have to work harder to find these men and to be creative intimately.

I found nothing offensive about the video. I feel the female anchor did the best job she could pointing out that the person they were discussing COULD be intimate in other ways and that she did find a caring man in the end.

Personally, I'm thrilled it was talked about at all. If we want this condition to get more recognition, we have to be open to all forms of discussions on the topic, and I felt this was very appropriate for the first video I've seen where it isn't being discussed by medical professionals.


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Post  Qu_789 on Sun May 01, 2016 11:54 am

As a long-term sufferer of vulvodynia and vaginismus, having been in a relationship as well as now being a single person living with this, I had mixed feelings about this show.

I feel it's important that growth in awareness is happening. I really felt alone and unable to cope with my diagnosis so if more light can be put onto vulvodynia then hoorah! New sufferers will have more understanding and as a publicly recognised condition hopefully it will gain more attention and research.

I felt the presenters discussed their initial reactions with limited information in an honest way.
But it really was a very narrow view and there are much better and more informative and well balanced ways to enlighten society of this condition.

This was not so helpful to instill hope in current sufferers... But at least when you visit the doctor, they might actually have heard of vulvodynia now!!


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