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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


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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