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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


Help me please!

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Help me please!

Post  fleener on Fri Sep 20, 2013 8:06 pm

Hello:
After I found out I had an estrogen/progesterone fed Breast Cancer tumor last october - I was taken off my hormones. I was put on hormones to help this condition about 15 years ago when I had the same problem. Any way after being taken off H ...about a month later I started to get a pain along my left vaginal wall starting from the opening and going up 2 inches on that wall. I was in so much pain after sex I ended up as an emergency case at my GYN's. He put me on a regimen of estrace cream and gabopentin ointment - anti- anxiety meds and Oxycodeine. This regimen only helped a little bit. I also had some burning after urination. Is this kind of pain really considered Vulvadynia? I find it painful to sit and won't go near having sex.

Then I decided to go see a Female Doctor Dr. Zolnoun at UNC vulver/vaginal pain clinic in NC. She changed up my medication to an anti - seizure medication and muscle relaxers. When I went to see her I was sitting on ice... 2 - months later I flew back home to Alaska not having to sit on ice. (I have a sister there in NC I could stay with to keep costs down). The Doctor also gave me a pessary to insert vaginally each evening - she thought I had a muscular problem pinching on a nerve - (while at my sister's I used it and never bled from it, but when I got back to Alaska after using the pessary I would find blood in my panties. So I stopped using it. I also am having a total relapse of the pain, sometimes burning after urination. (i have tried not eating high oxalate or acidic foods). Two nerve blocks here from a pain doctor has not helped.  My Physical Therapist has told me she doesn't know what else to do with me.  I try massage and acupuncture and they only seem to help for one day. I am starting to feel I'm at the end of my rope. I'm trying to follow up with the Doc in NC - but I'm not sure what else she can or can't do for me. Help please...
Eli

fleener

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Help me please

Post  meelie on Sat Sep 21, 2013 7:56 pm

He hon, you should join the Vulvodynia Society and find a PT that specializes in vulvodynia. Just any PT is not trained in what to do or what it really is. I have found one here in Ga and praise God I think she helping me. I have been to 4 apts and she did internal "massage" last week and it actually eased the burning for a few days. I have great hope at the moment. I finally figured out that it must be due to a pelvic fracture that I experienced on 4/30/2011 and I have been sitting on my right 'cheek' since then to avoid pain and it tightened and knotted up my pelvic floor muscles something awful. I pray you and all the others will find someone to help you and that my PT will be able to get my pelvic floor back to normal soon and that it stays that way. God bless.Smile 

meelie

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Help me please!

Post  fleener on Sat Sep 21, 2013 9:54 pm

Thank you Meelie for your reply. I will see if there are any Vulvadynia PT's n Alaska...which I doubt. OR I may look for one where my sister lives (in Concord, NC).

fleener

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Re: Help me please!

Post  zarli on Mon Sep 23, 2013 11:07 am

keep trying everything you can, you will find something that helps you. Please know you are not alone and when you are feeling bad think of all of us here on this forum, that's what I do. Every one is different and it can take time to find the thing that will help you, keep positive nothing stays the same.

zarli

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Help Me please!

Post  fleener on Mon Sep 23, 2013 6:49 pm

I am trying to do everything.... -a GYN I went to in North Carolina suggested Gabopenton. Taking it by mouth - so we'll see. The bummer is - I see my friends and sisters are working at great jobs and it is snowing in Alaska - so I am very depressed about my situation. I was a TV Producer - but because of my health - not sure I'm capable of doing that career anymore....just feeling very bummed out. Guess I need to find something that will make me happy.

Thank you for your response!

fleener

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Help me please

Post  meelie on Tue Sep 24, 2013 12:43 am

I was taking Neurontin like your gyn gave you but because mine is due to pelvic floor dysfunction the burning usually went away at night when I was sleeping, laying down without any pressure on my pelvic floor. I finally realized that even with the medicine nothing really changed because even with the Neurontin the burning would start again after being up for a little while the next morning.
I only took it at night and then when I started taking it morning and night it started messing with my brain and making me feel weird like spacey or something. So I quit taking it and nothing changed. Burning went away at night and returned the next morning.
So I guess I was taking it for nothing. But, I do hope it helps you. And don't give up. My PT says she had someone come from way over from the coast of Ga that was taking it and it helped her until she had a flare up and that sent her to Laurie.
I surely pray that you can find a PT to help you. Did you join the Vulvodynia Society? I haven't renewed my membership since I have found hope but if I can get on the site I will see if there are an PTs in Alaska.

meelie

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Help me please

Post  meelie on Tue Sep 24, 2013 12:55 am

Oh crap, I just logged on and it says it will send on request medical professionals for your area. I have already got my list for the Georgia area so it looks like you will have to join unless there is someone else on the post that might be from Alaska. When you join you have to tell them where you live. Anybody out there that might be from Alaska or know someone who is a member that lives there?

meelie

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Help me please!

Post  fleener on Tue Sep 24, 2013 3:26 am

I haven't started the Neurontin yet...so we will see. I do have a PT here. She comes highly rated by a friend who use to have Lavater Syndrome. PT use to actually go inside my V and press on the muscle she thought was spasming out. The first time she did that I felt relieved of pain the next morning. But the next two times it felt more like she was aggravating the problem. So we just do trigger point therapy and gentler exercises at home - she is also looking at getting me a biofeedback machine to use at home. Thank you so much for all of the input!

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Re: Help me please!

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