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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 …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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 …

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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.

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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

Hi,

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 …

Comments: 0

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


Vulvodynia Documentary

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Vulvodynia Documentary

Post  sandra13 on Thu Aug 16, 2012 8:02 pm

Hello everybody,

My name is Sandra and I have vulvodynia since almost 3 years ago, but I was only diagnosed 6 months ago. I have tried many treatments, including antidepressants, but my condition is getting worse.

I am also a filmmaker and I have decided that I want to make a low budget documentary about Vulvodynia and its emotional implications in women's lives. I am still in the process of doing research and finding funding, and I am searching for women who would be willing to participate in the documentary. I live in London and for budget reasons I would prefer women that live here as well, but if you suffer from Vulvodynia and do not live here and want to participate contact me anyway, I would love to hear your story.

I hope this documentary will be a cathartic experience for me and will bring this subject to the public sphere, so no women have to wait two years before they are diagnosed.

sandra13

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Re: Vulvodynia Documentary

Post  JemimaSurrender on Wed Aug 22, 2012 11:19 am

Hey Sandra!

I've only just seen your post...

I live near Birmingham and I'd be interested to hear your ideas on this documentary. I'm a pretty shy person as it is, and when it comes to talking about something like this you can imagine it's a lot worse! But for a cause this good? I reckon I could be a part of it.

If I can be any help let me know!

JemimaSurrender

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Re: Vulvodynia Documentary

Post  sandra13 on Sat Aug 25, 2012 8:56 pm

Hi,

Thank you for replying to my post. I will send you an email with my sinopses and more details.

Thanks!

Sandra

sandra13

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Re: Vulvodynia Documentary

Post  LisaAlhadeff on Sat Sep 29, 2012 11:10 am

Hi,

How far have you got with this? I'd be really interested in getting involved.

I'm currently battling to find a solution and wish there was some sort of documentary.

I live in Leeds, but have family in London.

Lisa

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Re: Vulvodynia Documentary

Post  nova_chek on Sat Sep 29, 2012 4:00 pm

Unfortunately I don't live near you, but I wouldn't mind giving you my thoughts on how vulvodynia has affected me if you need me to. I think this is great what you are doing, people need to hear about this condition and understand the effects it has on women and their loved ones. Good luck!

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Re: Vulvodynia Documentary

Post  huigensa on Mon Feb 11, 2013 5:31 am

Sandra,

I think this documentary is a fantastic idea and much needed. I have experienced vulvodynia my whole life and only came to accept it/admit it to myself about two years ago. I go to college in Wisconsin (am originally from New York), so I would probably not be able to help you very much with your movie, but I would like to to speak to you more in depth about this. You see, I'm taking a course on women's health issues this semester, and have been assigned a qualitative research project. I am currently in the process of gathering volunteers to interview about their experiences with sexual pain. One of the requirements for interviewees is that I must speak with someone who identifies as a women's health activist. I think that by planning to make such a film in order to inform women about this disorder, you definitely qualify as an activist. I would really appreciate the chance to interview you and include you in my research paper. Please let me know if you would be willing to do so. Feel free to contact me anytime directly at huigensa@beloit.edu if you think you have the time or desire to be involved.

Thank you for your future plans and considering my request.

Audrey Huigens

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Re: Vulvodynia Documentary

Post  tinkerbelle2 on Mon Sep 30, 2013 10:39 am

Hi Sandra,

I am in Brighton so not too far!

I am also very shy but would be interested in getting involved.

EDIT: Just realised this was an old post! Did you guys manage to get anything together?! Smile 


Last edited by tinkerbelle2 on Thu Oct 03, 2013 2:09 pm; edited 1 time in total
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Re: Vulvodynia Documentary

Post  Elc88 on Mon Sep 30, 2013 7:46 pm

Tinkerbelle's post brought this up to the top - I hadn't seen it before?

Are you still looking to do the documentary? I am in Cambridgeshire, only a £12 train ticket to London (on a weekend), and happy to help.

Personally I've been thinking of bringing this to the attention of some women's magazines. If 15% of the female population really do suffer from this, they have a really wide audience to speak to!

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Re: Vulvodynia Documentary

Post  tinkerbelle2 on Thu Oct 03, 2013 2:11 pm

Elc88 wrote:Tinkerbelle's post brought this up to the top - I hadn't seen it before?

Are you still looking to do the documentary? I am in Cambridgeshire, only a £12 train ticket to London (on a weekend), and happy to help.

Personally I've been thinking of bringing this to the attention of some women's magazines. If 15% of the female population really do suffer from this, they have a really wide audience to speak to!
That would be a great idea! I remember seeing something about it on Channel 4 embarassing bodies but they didn't really go into a lot of detail. Magazine article would be a good way of reaching out to other suffering girls and women and spreading the word!
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Re: Vulvodynia Documentary

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