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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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!!

maryjane

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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.

Noni
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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,
Noni

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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.

x

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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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