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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Vuvlodynia and onset

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Vuvlodynia and onset

Post  bjs156 on Wed Dec 26, 2012 10:19 pm

Hi all, new to this as well and not quite sure if im posting in the write way! But anyway, have suffered from this horrible thing for over a yr and a half, started with a new sexual partner. The thing is a had a huge reaction which all doctors and gyno thought was thrush or bacteria vaganosis, both negative. To this day i still believe i have a different discharge and smell, yet everything appears normal! Is the discharge a case for anyone else? yet a day doesnt go by where my vuvla is itchy sore burning etc.

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Re: Vuvlodynia and onset

Post  Kathye10 on Thu Feb 21, 2013 4:50 am

You may have a different type of bacteria/yeast that they didn't pick up on a normal vaginal culture. I don't know if you are still suffering (I saw your post was from last year) but call your insurance company and ask if they cover a bacterial DNA probe. It will show EVERYTHING. I wasn't showing anything on a normal culture but tested positive for 3 different types of bacteria on the DNA probe. It took 5 Dr's before one of them offered me the test. Just make sure your insurance covers it because it costs about $3,000. I still don't know how much of it my insurance covers but regardless I was glad to finally find out. Good luck!!
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Re: Vuvlodynia and onset

Post  raquelll on Thu Feb 21, 2013 8:52 am

What kind of stuff do they show on a DNA probe? Would this be useful for someone who has a lot of discharge? In my mind there is something "off" about the smell and texture of it, yet I never have bacteria or yeast either. Perhaps this is something I should ask for...

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Re: Vuvlodynia and onset

Post  jen007 on Fri Feb 22, 2013 2:13 am

I always had a lot of discharge and chronic yeast infections back when I first discovered my vulvodynia. I had a thick paste like discharge, usually white and when I had the yeast or was starting to get yeasty it would smell. One thing that helps is keeping the area clean. Not to say you ladies aren't clean, just to be even more clean than usual. Now I only use unscented ivory soap on my private areas and I use the target brand, up & up, woman's sanitary wipes. They haven't given me a problem and they smell good and keep me fresh all day. Another thing too, 100% cotton underwear! It keeps moisture away which keeps the yeast away. After doing all those things I noticed a big difference!

-Jen

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Re: Vuvlodynia and onset

Post  raquelll on Sun Feb 24, 2013 6:24 am

Is it still possible that there is yeast that is causing odor if I keep getting tested by my gynecologist for yeast and there's nothing? Even she thought there would be some yeast but then when she tested, she said there was none!

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Re: Vuvlodynia and onset

Post  Kathye10 on Sun Feb 24, 2013 7:36 am

Hi raquelll,

The DNA probe shows anything and everything possible as far as both yeast and bacteria goes. I think the regular culture shows things like candida albicans (regular yeast) gardenella (BV), group b strep, and maybe 1 or 2 others. The DNA probe shows like 5 or 6 different kinds of yeast and 10-15 types of bacteria. When I got the paperwork back, I was amazed at how many things could be living up there affraid

So to answer your last question, I'd say IF you have some form or yeast or bacteria that is not showing up on a normal culture, YES, that could be the reason for the discharge and odor. Have you tried probiotics or eating yogurt?
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Re: Vuvlodynia and onset

Post  carby148 on Mon Feb 25, 2013 6:35 am

I've always felt I've had different discharge than the average woman, although I'll never really know for sure unless I go asking or look at other women's discharge, which obviously won't be happening.

I've always had daily discharge, enough to have to change pantiliners about twice a day. I've recently had to stop wearing them as I think they contribute to my chronic yeast infections and vulva pain, but I've worn one every day since high school (I'm 26 now).

It's a burden really, because I feel like I'm constantly wiping or walking around with wet underwear. I can't imagine that's normal, as I've never met another woman who has had to deal with it like I have, unless they are just too embarrassed to talk about it.

I don't know if the odor I have down there is normal, although everyone says if it's not foul smelling, it probably is. My husband doesn't seem to mind it, so I'm assuming it's a normal vagina smell.

When my pap smears or cultures don't come up positive for any type of infection, the doctors don't say anything of concern, so I'm assuming I'm "normal," but I still think the amount of discharge I produce is abnormal.
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Re: Vuvlodynia and onset

Post  raquelll on Mon Feb 25, 2013 6:46 am

Yes, that is how I feel about the discharge! I've just given up wearing pantiliners or anything like that and have wet underwear all the time. Also, stained underwear. And yeah, nobody has ever complained about the smell or anything, but I personally am pretty sure it's not normal, even if a gynecologist has never really said anything about it. UGH vulvodynia mysteries...

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Re: Vuvlodynia and onset

Post  carby148 on Mon Feb 25, 2013 5:49 pm

raquelll wrote:Yes, that is how I feel about the discharge! I've just given up wearing pantiliners or anything like that and have wet underwear all the time. Also, stained underwear. And yeah, nobody has ever complained about the smell or anything, but I personally am pretty sure it's not normal, even if a gynecologist has never really said anything about it. UGH vulvodynia mysteries...

I feel ya. I've looked up "normal vaginal odor" and most sites say a "musky" smell, but like, what the heck does "musk" smell like?

I know for me, part of the unfavorable odor is my natural odor and sweat, so I notice a more normal smell after showering. I also blow dry my vagina after showers instead of using towels, which reduces the moisture down there and reducing the risk of bacteria from the towels.
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Re: Vuvlodynia and onset

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