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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 3

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


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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