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» 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

» 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 …

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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). …

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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 …

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Aloe Vera Gel

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Aloe Vera Gel

Post  Sarah001 on Mon Aug 22, 2011 11:12 am

Anyone tried aloe vera gel as a topical treatment? Yesterday I got an email about the Yes lube and decided to investigate as I have to wear some form of lube all day to avoid friction. I found a few "yestimonials" supposedly from women with V and VVS and also some info that states the water based version gets absorbed by the vulval skin and improves tissue health. Now this intrigued me because I'm one of us girls with inflamed skin in the vestibule and I wanted to know what made that happen so I checked out the ingredients and it seems to be mostly aloe vera. A quick search for aloe vera on Google and it's the aloe vera that tissue absorbs and also has anti-inflammatory qualities. Has anyone tried it topically? I'm not sure if it will set my skin off but fully intend to give it a go and see what happens, I've ordered a small bottle of the Yes water based plus a tube of aloe vera gel should it go well (I can always use it for other areas should it not and the actual gel is way cheaper than yes). Just wondered if anyone has any input about this?
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Re: Aloe Vera Gel

Post  mmorgan on Mon Aug 22, 2011 2:34 pm

I had a co-worker whose husband had been badly burned by tar. She applied aloe vera to his burns everyday and he ended up with no scars. Aloe Vera is truly a miracle plant, you can just about find it growing in everyone's household here in Texas. Very Happy I hope it works for you as I've seen it work for many other people though none-vulva related.

Also I've heard many people say to drink aloe vera water, it's suppose to heal also.
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Re: Aloe Vera Gel

Post  Sarah001 on Tue Aug 23, 2011 11:49 am

Thanks for that input, I have no idea why I didn't think to try it sooner since it's even mentioned on the vulval pain society website as something to use. It may work or it may not but I'm definitely going to give it a try. Not sure I could grow an Aloe plant here in the U.K, does it need to be especially warm for them to grow? If so definitely not!! And I'm terrible for keeping plants alive so perhaps I'd better stick to the gel!!
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Deasert Harvest Aloe

Post  Aussie on Tue Sep 13, 2011 12:45 am

Hi Sarah,

Deasert Harvest do an Aloe in a cream that is used for internal pt or a topical soothing lotion for vulvodynia.

As for the yes water based lube it is the best I have tried. Very impressed. no irritation.

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Re: Aloe Vera Gel

Post  Sarah001 on Thu Sep 15, 2011 12:45 pm

I've found the Yes lube isn't as good as plain old Aloe Vera Gel but I'm using it for daily lubrication on sore skin not sex so that may be why, I'm still not anywhere near the having sex again stage but it isn't a huge issue right now as I don't have a partner. The only problem with the A.V gel is it needs reapplying after every pee as it's water based but it is very soothing should anyone else be thinking about trying it.
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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 5:05 pm

Hey Sarah001
Are you the girl from the UK? I haven't been on this forum and cannot find my old posts.

I don't know if you remember but the last time I was on here I said I was going to the GUM clinic to try and get treatment. Well I did just that and was prescribed Amitriptyline 10mg which is normally for a 10 week course. After 5 days of taking them I felt as though there was an improvement but the urethra still felt odd after peeing. I was told by my dr that I must give time for tablets to work. However after 6 weeks of taking them, it's coming back again. I was doing quite a bit of exercise, not sure if this has aggravated it. I started feeling itchy on the vulva which then turned to pain. I'm feeling a rawness on my vulva and feels as though it's being stretched and pulled. Now having dull pain on the vagina.

How are you getting on with the your pain? Are you taking anything that has helped relieve your pain? Some people are having baths in baking soda and using peroxide hydrogen to relieve the pain. Im too scared to do that in case i make it worse.

I just pray that I meet a nice man who will be patient with this condition. Im avoiding meeting men because I am so ashamed of this conditon.

I wanted to come back on this forum and tell you all how the treatment has done wonders but instead im crying about it again. How do you deal with this everyday? This is always on my mind and its damaging my mental well being. I wish it just goes away for good.

Hope all is well with you and you have found treatment to at least control it.

Thanks

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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 5:10 pm

Sorry Sarah001, of course you are the girl from the uk. Just saw your profile. My head isn't with it today. I'm going back to the Gum clinic this week to see what the Dr can do for me. He did say he gets alot of ladies who come to him with the same condition and treatment has worked for them. He's a good Dr and the only one who i have come across who is willing to help so i am grateful.

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Re: Aloe Vera Gel

Post  Sarah001 on Sun Sep 18, 2011 7:44 pm

Hi Kay_star, firstly 10mg of Ami is a teensy tiny dose so don't worry too much if it doesn't help yet. I got to 50mg before I realised it wasn't going to do the trick but some girls have luck at much lower doses. I'm now also on 300mg of Lyrica a day which helped a bit for a while but now doesn't help so I'll be increasing the dose shortly. Not all wmen get full relief from meds though and I'm positive mine is myofascial in origin so it's no surprise that neuropathic type drugs aren't working great. However, they do for some women.

Secondly don't feel ashamed, this is just another part of the body that's got a problem and needs attention that's all. Plus don't get caught up in the "there's no cure for vulvodynia" stuff you read online, vulvodynia isn't even a condition it's a description of symptoms and doesn't tell us why they are there so it depends what the source of the problem is as to which treatment will work. Drs call it vulvodynia because they are basically lazy and can't be bothered to try and figure out the source of the problem if it isn't a simple infection etc. A good book to read is "When Sex Hurts" by Andrew Goldstein (I think, but it's available on Amazon) as he poo poos vulvodynia as a diagnosis comparing it to if you had a painful knee and they didn't investigate the problem just told you that you had "kneeodynia" you wouldn't accept it so why should we accept vulvodynia as a diagnosis when it's not. The book then runs through the various causes of vulvar pain and discusses treatment options for each one. Don't give up trying to find out the cause.

Thirdly the baking soda baths are if you have too much good bacteria and the hydrogen peroxide is if you don't have enough. Neither are a great idea unless you have been diagnosed with your ph being off or too much lactobacillus which is very rare. Forget them unless they have said Bacterial Vaginosis is present which they routinely test for at a GUM clinic so they would have said after taking swabs.

Have you had anyone check your pelvic floor? That's vital in my opinion. I'm still struggling badly but I have complicating conditions that are holding me back and making it difficult for me to maintain any progress. If you haven't get referred to a Women's Health Physio and don't worry about upping the Ami dose, it can break the pain cycle if it works. Feel free to ask anything or discuss anything, PM me if you need to.
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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 8:26 pm

Hey Sarah001

As always your advice is so helpful so thank you! You sound like a very strong women who is just dealing with it. I will discuss with ther GUM dr.

Thanks and take care. I will keep you posted about my progress.
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Re: Aloe Vera Gel

Post  Sarah001 on Mon Sep 19, 2011 5:35 pm

Yes do let us know how you get on. I'm quite used to chronic pain because of my other conditions and I'm stubborn as hell if someone tries to tell me I won't ever improve or they don't know the reason for the pain. Being bull headed determined is the only way to deal with this! Wink
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Re: Aloe Vera Gel

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