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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
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» What helped me
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New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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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 …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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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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