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» What's next?
Today at 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

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

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


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


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

sitting at the computer in pain

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sitting at the computer in pain

Post  maryjane on Wed Mar 30, 2011 7:35 pm

Hi everyone

I am sitting here at the computer and the pain is quite bad burning and tingling. I have put a brave face on at work today trying to look like I am normal like everyone else. I think why me and then read everyone elses story on the forum and think at least there are people here who I can relate to and I am not on my own The pain started about two weeks ago after almost 3 year break so I am hoping that it goes soon and I will feel normal again. I forgot what the pain was like when I was pain free, but I know there are worse illnesses out there so for the moment I will grin and bear it!!


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Re: sitting at the computer in pain

Post  noni on Thu Mar 31, 2011 4:11 am

Hey Maryjane,

We have all been there...in utter, horrific pain and still maintaining appearances.

I just want to reach out and give you a hug! God bless you for your courage.

How is Elavil coming along? You said you went off the meds and have started up.

I am on 40 mg at the moment and I am wondering if I will need to be for the rest of my life...in order to lead a productive life and be able to function and take care of myself.

I get scared at times...worrying about my future with this condition. The doctor told me I have neuropathic pain in my vulva...does it just ever go away? Or is it something one has to manage to live with until one dies?

I wish there were doctors who could actually care enough to help us!!! Not just do studies and poke and prod us...but show empathy and provide us with a kernel of faith/hope for our lives and futures.

Why do we have to suffer so much ??? We lose our self esteem, sexuality, physical capability, mental well being in all this....and for what???? Why????

Im frustrated tonight, can you tell ?

I think more needs to be done about this! This is utterly un acceptable in my opinion, that we have so little support in the medical community and in society in general.

Take care ladies...you are in my thoughts.


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Re: sitting at the computer in pain

Post  Aussie on Thu Mar 31, 2011 6:18 am

I agree with you Noni and thanks for your post to my little rant yesterday. You say you have been told you have neuropathic pain in vulva. That's what I was told. Refused to believe that was the only problem. Have you tried PT? - I am so frustrated with the medical industry also, I don't think they care enough about us and because they can't 'see' the pain they think it's not that bad.

Maryjane, I work at a computer also and have bee keeping up appearances as best I can for the past 9 months . I told my boss. I have told my boss what the deal is ( i told him about 3 months into it), he is extremely understanding and is happy for me to go to physio appointments during the day as they cant be done outside of work hours. Perhaps approach your boss and explain the situation ( you don't have to go into detail) I was dreading it but so glad I did because my work was begining to get affected. Now he knows there is so much less pressure because he can understand why I am not performing at my best.

Thinking of you both x


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Re: sitting at the computer in pain

Post  noni on Thu Mar 31, 2011 12:33 pm

Hey Aussie,

I have not yet attempted physio as I am worried it may just irritate me even more. I dont know what to do anymore...Im scared everything will cause me pain. I know this is not a healthy attitude!

Aussie, you have guts to have told your boss...I dont know if I am there yet...I get very anxious at the thought of clueing people into my condition...maybe in time.

Take care ladies,


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Re: sitting at the computer in pain

Post  Sebby (Admin) on Thu Mar 31, 2011 7:42 pm

Hi Mary Jane

My thoughts are with you as I too am sitting hear with terrible soreness and stinging due to the sanitary pad! I am going to brave tampons tomorrow as I cant stand this anymore.

I have bought myself a doughnut cushion to use at home and its great cos It takes the pressure off the vulvar. I got mine off amazon a foam one with a washable cover.

Im not yet brave enough to get one for work cos I just dunno what Id say to people! I have a soft cushion at work but its not a doughnut one.


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Re: sitting at the computer in pain

Post  Aussie on Fri Apr 01, 2011 1:38 am

ah, pads are the worst! even cotton ones cause me irritation. I use tampons with applicators and put like half a bottle of lube on them, they go in fine, It seems to hurt afterwards on my lighter days. Heavy days I can hardly feel the tampon.

Maryjane, Physical Therapy has done alot for me. I can now have sex without pain. As for sitting, jeans, pads, daily pain - unchanged. But it's worth a shot. Seriously think about telling your boss. This thing wont go away overnight at atleast making him/her aware takes some of the pressure off you.



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Re: sitting at the computer in pain

Post  Sarah001 on Fri Apr 01, 2011 12:02 pm

The strange thing about having SI and back problems is you get used to sitting being very painful, I do minimal amounts of sitting because of this. You can get Occupational Therapists to assess your work area and there are sit/stand computer desks where you can raise it up and stand some of the time if that helps. Some people get on with doughnut cushions which often come with a cover so they're not obvious unless someone makes a point of feeling them. If you're sneaky you could get an inflatable neck cushion, one of those shaped like a U, and use that to keep your vulva off the seat too. The good thing about the inflatable one is it can be deflated and hidden in your bag if you wanted to in between use.

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Re: sitting at the computer in pain

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