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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


Pasha electrode

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Pasha electrode

Post  Husband on Mon Jul 04, 2011 10:51 am


Did anyone know something about this treatment outside of Germany? I think Vulvodynia pain could be comparable to this kind of neuropathic pain.

http://www.wi-muenchen.de/content/aktuelles/aktuelles.php?id=32

Husband

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Re: Pasha electrode

Post  jules on Tue Jul 05, 2011 3:10 pm

I live in the US. i read your post. i have never heard of this treatment. however, i am having something similar implanted into my spine this summer. it's called a neurotransmitter (aka spinal cord stimulator). the docs will implant to wires (leads) in my spine w/ a battery connected to it. I will have a remote control to control the vibrations to the nerves. the vibrations are supposed to interrupt the pain message to the brain. i will have a one week trial (surgery, but battery will be on outside). if the surgery is successful then i will have the wires and the battery permanently placed under my skin. the treatment you found sounds similar.

jules

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Re: Pasha electrode

Post  Husband on Tue Jul 05, 2011 3:40 pm

Hi Jules,
yes I think this is the same basic. My wife is having the same type of problems like you. After the Botox did not work, she only took Ami but it did not work during the last months too. Actually she is trying Lyrica and Cymbalta but this seems to be a really bad flare up.
The difference to the permanent therapy you are going to get is that the nerves will be finally destroyed. This sounds good, but not if other functions will be harmed too. However, we did not contact this clinic so fare. But please keep me informed about your experiences.

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Re: Pasha electrode

Post  Aussie on Thu Jul 07, 2011 2:56 am

Sounds like a possibility as for some this all started with infection. The idea that the infection stays within the nervous system is interesting.

Jules please post when you get this treatment. Thanks x

Aussie

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Re: Pasha electrode

Post  Husband on Thu Jul 07, 2011 6:23 am

I am not a doctor, but I think Herpes zoster virus infection as reason for this neuralgic pain disease (and what they treat with this method up to now) can be easily identified and is not a part of Vulvodynia related pain. However the result, strong pain signals due to a structural change of nerves are obviously similar. They claim a 70% pain reduction by this method but I think they never have done this for Vulvodynia patients. I have to leave this decision to my wife, but I think we will get in contact with this clinic and I will keep you informed.

Husband

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Re: Pasha electrode

Post  jules on Fri Jul 15, 2011 4:18 am

husband,

question: If your wife proceeds with this treatment, would her nerves be permanently destroyed? My surgery will not destroy the nerves. However, in the past, I had four different nerve blocks. Two were in the Pudendal Nerve. I was told that if the blocks took away the pain, the docs would be able to perform a surgery that involves the cutting (laser) of the Pudendal nerves. I am not a candidate for that surgery because it wouldn't help me. I had no relief from the nerve blocks.

I will keep you all updated on my Nuerotransmitter surgery. I am waiting to hear from the clinic. My health insurance needs to authorize it first. Smile

jules

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Re: Pasha electrode

Post  Husband on Fri Jul 15, 2011 9:50 am

They try to stimulate the nerves in order to define the right ones. After this there will be a permanent destroying.

My wife changed the medication. At the moment with Ami and Lyrica, she is o.k.. However the electrode is still an option.

Good luck for your surgery.

Husband

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Re: Pasha electrode

Post  jules on Tue Jul 19, 2011 11:29 pm

I'm on Lyrica too. i am going to be increasing it from 100-300 over time. i'm on two other meds as well,. i have never tried Ami. my surgery will probably be in mid August. fingers crossed. say hello and good luck to your wife.

jules

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Re: Pasha electrode

Post  Husband on Thu Aug 25, 2011 11:43 am

Hi Jules,

have you done it and how is the result?
Best regards

Husband

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Re: Pasha electrode

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