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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» 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

» 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

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

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

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


Please someone ., anyone with this help me:(

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Please someone ., anyone with this help me:(

Post  Claire1031 on Wed Feb 06, 2013 5:10 am

Hello .. My name is Claire and I have been diagnosed with vulvodynia about 2 months ago. I was devastated because I already did my research on it. I'm going to order neogyn tonight and have been doing pelvic floor muscle pt ..( which is very hard for me and uncomfortable) they prescribed me norontin and I've been on it before and had to go to the hospital because my withdrawals were so bad so I don't want that.. Does anyone think I should try this neogyn and see if it works .. I'm trying to have faith but I feel as though no one in my life understands the stress and anxiety of this condition.. Thank you to those who will take the time to give me advice I appreciate more then you know!!

Claire1031

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Re: Please someone ., anyone with this help me:(

Post  mcclave96 on Wed Feb 06, 2013 2:02 pm

You are one of the 1st people I have ever read that has withdrawls from neurontin.....i too suffered unbelievably!!! I just dropped down to 1800 a day(from 3600) and i am noticing after about 2 months it is starting to help a little. I have read that the cream you are referring too does not have great results....i'm not sure what your symptoms are, but from what i am learning the pain we have on our vulva is from nerves...which is where the PT starts to help. I would be careful of creams....once I stopped everything, but Crisco I have noticed a little improvement...I think all of the creams aggravate the vulva that was never really the problem(in some cases). I am also finding a little improvement when I had magnesium supplement to my vitamin regiment....it helps with inflammation...which is what my doctor believes is the ulitmate problem with me...I know most of what i wrote you won't really help but i know how desperate you feel!! I am so sad for all of us suffering alone!!

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Re: Please someone ., anyone with this help me:(

Post  jen007 on Wed Feb 06, 2013 4:50 pm

Hotmess,

I'm not a fan of commercial creams that advertise they help stop vulvar pain or cure vulvodynia. Usually these types of cream are just scams with false promises. Did you're doctor recommend this cream to you? I wouldn't put anything down there before consulting a doctor.

What kind of pain do you have? Provoked or unprovoked? Is your pain interior or exterior?

I'm asking these questions because, depending on the above, different treatments cater to different types of vulvodynia. In my case I had provoked pain where I only experienced pain when I was touched, also my pain was around the interior entrance area, around the rim, of my vagina.

-Jen

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Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 2:05 am

Thank you so much for replying first of all!! And yes I refuse to go back on neurontin I just think its a bad drug.. But as for the cream I'm kind of desperate and will do anything I have to to make the pain go away I have provoked localized vulvodynia and its definetly interior .. I feel like the pt isn't going to do anything until the pain in my vulva gets better .. This seriously is such a frustrating condition and I pretty much cry everyday and think about it 24 7 which is making it worse because of all the stress .. Anything I eat I'm like oh is this affecting it or how I sit or how I stand .. I have never felt so alone. I keep trying not to have self pity because I'm not like that and don't like to think this negatively .. Thinking positive is the way to go but it's literally impossible right now .. But about the cream I was thinking about the affects it would do to the inside of me. Does anyone else feel this alone and ashamed about this? I wish there were groups we could go to so we feel not so alone:(. I'm going to call my doctor tomorrow and ask about the cream. I already know she's going to say no but I will make the desicion.. Again thank you ladies for answering me you've made me feel not so alone for a couple minutes:)

Claire1031

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Re: Please someone ., anyone with this help me:(

Post  jen007 on Thu Feb 07, 2013 3:51 am

I had experienced the same pain you're feeling now. I'm going to be honest with you, the cream most likely won't work, in my opinion. The only cream/ gel that ever gave me relief was 5% lidocaine cream. It temporarily numbs the area you apply it to. I would highly recommend having your doctor prescribe it to you. It really takes the edge off when you're experiencing a lot of pain.

My doctor also had suggested for me to try pt, but told me in the end it wouldn't solve my problem. My pain was so bad I couldn't even stand to bare the cotton swab test. After 5 years of suffering and 3 years of treatments that didn't work I decided to have surgery to remove the affected areas which caused me pain. I only did it as a last resort. There was nothing else I could do so I figure what the hell...what else could I do? It was the best thing I ever did. I'm no longer in any pain. It doesn't always work out that way for everyone, but my doctor assured me that with the type of vulvodynia (the same as yours) the surgery would be a success. I would take to your doctor about it, but only as a last resort kind of thing. Try everything you can until you've tried it all before considering a vestibulectomy.

But definitely do give the lidocaine a try. I've even heard of some women using coconut oil or crisco down there to sooth the area.

Don't feel alone! You've got a great group of ladies here who do really care about all of the members here. There's always someone to talk to! Stay strong!

-Jen

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Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 4:15 am

Thank you jen I really appreciate it! I do have the 5% lidocaine and sadly that doesn't work for me at all .. I put it on before sex but it is still absolutely excruciating. I want to do the surgery but I know they will not do it until I've tried everything .. I need to just chill out about the whole thing .. I'm just getting mixed info so it's aggravating. I need to stop stressing its just so hard .. My boyfriend just told me it makes him want to cry because of how I can't stop thinking about this and can't stop looking up research .. He knows how much it's killing me. Everything's going to be ok I just have to keep telling myself that .. Thank you for making me feel better though .. I'm going to ask about the surgery next time I go to the doctors and shell prob laugh at me but its worth a try! Thanks again !!

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Re: Please someone ., anyone with this help me:(

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