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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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 …

Comments: 4

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: 3

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


MTV - i cant have sex. I am so disappointed in this episode

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MTV - i cant have sex. I am so disappointed in this episode

Post  emma on Mon Jan 10, 2011 2:11 pm

I don't know if anyone has seen this but mtv has made an episode labelled - i can have sex.

To be honest i dont think it portrays vulvodynia conditions very well.

These girls all ended up with a quick fix solution!! i have not had any relief from any of my treatments and it just doesn't show the extent of the emotions that you go through. The girls did a great job but i think mtv edited it the wrong way.

I have had many different treatments over the time span of about 4 years and seriously, when you realise that each treatment that you have put your heart and soul into hoping it will work, well it hasn't worked, its the worst feeling in the world.

Also in every day situations. I dont feel that i can discuss this condition with anyone except my family. My heart sinks when any of my friends bring up sex in conversation and ask for my opinion. I just make up answers because otherwise it gets awkward.

id love to know what you guys think of the topics ive raised here

em xo


emma

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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Mouse on Mon Jan 10, 2011 7:12 pm

Hi Emma,

Welcome Smile

I don't think anyone outside the US can view the show. I read about it and tried to find it on youtube, no luck.

I read a review about it on the Susan Bilhiemer's secret suffering website, she said while it was great there was a show about vulvodynia the treatment options and how to get treatment weren't very well covered.

I've told my friends I have a chronic pain condition, not even my husband gets that it's 24/7 though. I didn't tell my family until last month (and then just the PG version) my Dad has cancer so they have enough to worry about. It's tricky! I was gobsmacked recently when a woman I know told me about her friend who has just had a breast removed. Apparently she goes on about it a bit. No shit!!! Maybe people are just too busy to care? Which is why we have online forums for likeminded people.

This year I'm going to try really hard not to be such a hermit. I can come on here and have a moan with people who understand. I'm seeing a PT for the first time and maybe a womens health specialist. Hmmm will also need to find a job!

Have you joined the FB group Emma? We are all real people and it's lovely to see peoples faces.

Take care xx.

Mouse

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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Ellie on Tue Jan 11, 2011 1:14 am

I completely agree with you Em! It was portrayed as something that has a quick fix solution Sad It was nice to get the word out about issues like this, but it really didn't show the real frustration and that it effects more than just not being able to have sex.It effects your day to day living. But still nice to get the word out.
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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  [Sara] on Tue Jan 11, 2011 4:15 am

I do agree that they edited the show pretty badly...they focused so much on sex (well, I guess that was in the title of the show Shocked ). Not surprising since this culture is so focused on sex, and having lots of it. It doesn't help me with my condition at all...

It was good that they got the word out about these conditions, but I do think they made it seem like it can just magically be cured. I was just amazed that MTV would do a special about it, so I posted it on the facebook group when I found out about it. They definitely left out a lot of crucial information.

I tried using a video-capture program to record it for the non-US ladies, but I still haven't figured out a way for them to watch it! Maybe I'll think of something else soon. cyclops

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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  emma on Tue Jan 11, 2011 7:53 am

i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Ellie on Tue Jan 11, 2011 8:01 am

I was going to say, I am getting the full episode very soon here (downloading) for others out of the states to see it. Smile I will post it here and/or somewhere on these forms so everyone can view them.
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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  noni on Tue Jan 11, 2011 2:54 pm

Have not seen it, but as it is mtv....not a complete shocker that it focuses on sex
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Re: MTV - i cant have sex. I am so disappointed in this episode

Post  Sebby (Admin) on Tue Jan 11, 2011 7:42 pm


OOOh I may search for her on facebook. I subscribed to her videos on youtube.

I remember channel 4 doing their embarrasing illnesses programe on vulvodynia and the women went in there got prescribed some ami was given actupucture and would you belive it she was getting better! No mention on other meds, pelvic floor dysfunction, bio feedback, etc etc...

I dont understand at all how it all seems so simple from telly!

I emailed the programme...ignored..how suprising.. Mad

Im thinking we need to get this into the press more..I really dont know if any womens magazines have covered this topic properly? Not sensationalised mags like chat..sick of seeing the horrible cover stories they have like "my cat killed my husband then our house blew up and I got my legs cut off by the lawnmower" type stories Shocked

Like Cosmo or something? Hmmm I dont mind being interviewed if I knew they would portray it in the right way and I was anonymous lol but I dont really trust they would cover it properly with all its complexities and how it really effects our lives?

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how do I get onto the facebook forum?

Post  nadja on Tue Jan 11, 2011 8:16 pm

emmmielou wrote:i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

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Re: MTV - i cant have sex. I am so disappointed in this episode

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