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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Duration of Medicating Oneself

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Duration of Medicating Oneself

Post  noni on Sat Jun 18, 2011 12:03 pm

Hello Ladies,

This has been on my mind for quite some time. I know meds arent for everyone...but for those of us taking medication for this crap condition: How long are we to be on the meds for ???

When I asked my "specialist" she said Oh most women are on them for six months then taper off...

Im not convinced. I have heard of women tapering off...but mainly women who required low doses to tame this pain.

There have been moments when I missed a dose of my meds and the pain came back and it was awful.

Those of us on meds...do we need to be on the meds for an indefinite period of time??? Im just terrified that when, one day, I will not want to rely on pills that my pain will come back in full force.

I feel like there is a lack of answers out there. The doctors dont know what they are doing. It just causes me additional anxiety and depression.

Take care girls

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Re: Duration of Medicating Oneself

Post  Sarah001 on Sat Jun 18, 2011 12:59 pm

This is something I was also told six months then taper off about but from what I've seen online there are very few women who can actually ever come off them once they are on them, unless of course they find out the source of their V and treat it at the same time as taking the meds. I've been taking meds for about a year for it now and I haven't even managed to get significant pain control yet. I think the ladies who only take meds for 6 months then come off them are ones who are genuine neuropathic pain which the meds work very well for and calm down the pain signals whereas if there's some underlying cause like pelvic floor muscles etc obviously the meds don't work as well in the first place and nor do they stop the nerves misfiring so they don't get rid of the problem which of course means 6 months then taper off isn't going to happen.
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Re: Duration of Medicating Oneself

Post  noni on Sat Jun 18, 2011 1:13 pm

Yes Sarah I have also read that very few women have a smooth tapering off phase...theres withdrawl and also flare ups I have read about. I dont know anymore...
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Re: Duration of Medicating Oneself

Post  jules on Sat Jun 18, 2011 3:55 pm

I expect to be on them for the rest of my life. I have never been told i will be able to taper off after a certain period of time. I get a blood test to check my liver once a year. I'm like you Sarah, I haven't even gotten to the point where my pain is manageable. I also have read that the meds will work for a period of time. But, then we need to try a new med or adjust the levels.

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Re: Duration of Medicating Oneself

Post  noni on Sun Jun 19, 2011 3:07 am

Hey Jules

Yes thats what im anticipating...the need to medicate for the rest of my life and/or try new meds when current ones lose their effect.

Its just very sad for me to think this. Taking medication for the rest of my life, dealing with the side effects, not being able to wear jeans ever again, no bike riding...etc etc....sorry for the rant.

Thank you kind ladies for your input.
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Re: Duration of Medicating Oneself

Post  jules on Fri Jun 24, 2011 12:23 am

Maybe that won't be the case. We don't know what the future holds. I don't mind being on meds. But, it would be awesome to not have to rely on them. I am doing acupuncture w/ the hope that my pain decreases and maybe i can reduce my meds. No need to apologize. We all need to rant from time to time.

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Re: Duration of Medicating Oneself

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