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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4


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!

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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

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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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