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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


hey, I did this

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hey, I did this

Post  grassy on Tue Jul 17, 2012 8:26 pm

Hey you guys, I'm a member here, but rarely post. This is what i did. And I am alot better. NOt totally cured, but not crying all the time. I took diflucan, one per week for ONE year! my story all started with one yeast and the burning never left. I was desperate. But anyways, my primary doc put me on diflucan. One per week for as long as i needed. I talked with all kinds of people, And we just guessed that maybe it was a yeast hypersensitivity issue. I'm not a doctor, and i wouldnt do this unless supervised by one. But it did help, and it did take that long too. Long long time. my theory is, that the diflucan kept the yeast down, lessening the hypersensitivity. Long enough for the skins to semi heal and some of the pain to leave. Like i said i'm not cured from the vulvodynia, but am able to think about something else besides the pain. Basically the diflucan didnt bother me much either. But it does have a tendancy to increase v discharge. Hope that helps someone. Maybe something to talk over with your doctors. cindy

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Diflucan

Post  Rainy Day on Sat Jul 21, 2012 8:39 pm

That's interesting. I prob couldn't do that since I am so sensitive to 'real' Rx drugs...but it means I am definatly interested in exploring the yeast connection still...

I am so pissed that most of us have to figure out this thing by ourselves. Doctors suck.

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Re: hey, I did this

Post  stacym918 on Sat Jul 21, 2012 10:13 pm

grassy, are you still taking the diflucan?
I too did long term diflucan, about 3 and a half years ago. It helped, while I was on it, but once off, it did not keep my symptoms at bay.

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Stacy- how long did you do diflucan for?

Post  Rainy Day on Sun Jul 22, 2012 2:44 pm

My doctor only allowed me to do 3 pills for 3 days...and said, "if you aren't better by 3 days, it's not yeast). Grr.....

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Interesting

Post  BpCookie on Sun Jul 22, 2012 3:08 pm

This is the second or third story that Ive heard like this. I talked to my Gyno about it and she thought it was interesting and was willing to try it. She said that I may have become allergic to my own yeast . Unfortunately I was only able to try two months of treatment and she ended up leaving the practice. Perhaps I will talk to one of my other Gyno's.

Take care everyone and keep those vagi-gi's cool.
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ok you guys

Post  grassy on Sun Jul 22, 2012 6:48 pm

Hi everyone. Ok but I am one of those people who are really sensitve to medicines. I almost died from the sulfa antibiotic that started all this. So with that being said, the diflucan didnt bother me much. I had a male PA who didnt know what to do, so he went along with my idea, and i followed along with another lady who had a very bright V specialist. Her specialist thought it was her body hypersensitive to her own yeast, even if its a normal amount. My opinion on the diflucan? for what its worth. I dont think it is a yeast cure. Its just a help.They market as a one pill cure, but i dont believe that.
One a WEEK FOR A YEAR. Then I was feeling better, and tried to go off it. V flared up. So I went like three weeks with no diflucan, then took another pill. Did that a few times, and now I am basically off it. weaned myself off. I would say honestly that I feel 3/4 better. At least not crying over the pain. Not all the way cured tho. But if you want to try it, do it under a doctors supervision, because diflucan is hard on the liver. Then maybe a person could see how it goes, maybe a few months. But one to three pills Isnt enough. I think yeast gets into the tissues and keeps then burning, but i'm not a doctor. just my secret thoughts.

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Ok grassy, we have something in common!

Post  Rainy Day on Sun Jul 22, 2012 10:09 pm

I also had a terrible reaction to my antiobiotic. I took Macrobid for my raging UTI. I had 3 terrible reactions: 1) My blood vessels all over my body hemoraged (petachaie), 2) my ankles became so sore I was limping everywhere for a few weeks, 3) my vaginal, butt, and leg area was burning all over. So, we have something in common...horrible reaction to antiobiotics.

Have you tried a major diet juicing cleanse to to try to rid yourself of all the toxins that a allergic reaction creates? I know some of this antiobiotic must still be bothering me since I still have some light petechaie spots...even though its been 6 months. Normally, petechaie go away in 2 months tops.

Have you tried stretching those muscles at all to try to rid any more of your remaining pain? I only am trying it cuz the butt pain went away...so maybe I was on to something there...

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Oh No!

Post  grassy on Mon Jul 23, 2012 8:08 pm

Its not funny, but i'm giggling. We do have that in common. I got hives, and spots and they lasted two years, I became allergic to everything. Even things i used all my life. Like all soaps, deodorant, foods! almost anything. My skin burned all over my body,burned like our v does now. It gave me a horrific yeast. It messed up my internal organs. What a nightmare. My legs had cramps so bad I couldnt walk either. Hey, never take a sulfa antibiotic. NEVER. It would do you in. You know what? my secret opinion is that the antibiotic somehow Burned the v skins? or it was the yeast it caused? But finally on the interent somewhere i saw other people saying that antibiotics can attack skin and maybe ,just maybe, that did happen. Who knows? the medicines are dangerous these days. And the V skin would be the most delicate of all skin on the body. No i havent juiced or tried stretching. But i go to the chiro all the time, and he says he doesnt think its pn nerve. But he could be wrong too! Thats a good idea, maybe i ought to try stretching.

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spots

Post  Rainy Day on Mon Jul 23, 2012 9:57 pm

Did they call your 'spots' petechaie too? I also had skin that was irrititated slightly all over my body. There were times I itched all over...times I tingled all over...etc. That has somewhat wore off though. I feel like the antiobiotic 'reset' my entire genetic make-up. I have also made an appt with a natural doctor that is well-known in this area for solving 'medical mysteries'. She will probably pack up her office and move after I come to visit her for some answers!

It is nice to know that you must have had yeast of some sort if Diflucan made a difference. That sort of helps me in my strategy for the next move...although I won't try diflucan right away. besides that, doctors don't want to help me, so they wouldn't prescrive it anyway!

For the exercises, I downloaded the Amy Stein book on pelvic pain. And, I googled some exercises off the internet. My butt pain was completely gone, although my toddler passed his flu on to me today...so I crapped water like 5 times in a row at work...so now I am so scared it will 'flare' things back there again!!! Smile

Did you get pain down your thighs too? That's the worst for me. The vaginal area isn't too bad except my pee hurts when it hits the sides...but I notice its always super acidic.

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rainyday?

Post  grassy on Tue Jul 24, 2012 7:21 pm

I have a friend who is a microbiologist, You know, a real brainy smart one. I emailed her right away. She helped me alot. But I love the way you put that. It reset your entire body. Exactly! how I felt. Wow. No i didnt have those kind of spots, I had hives, all over. My skin burned all over. But the hives was something seperate. Two years my one eye would swell up, off an on. My inner stomach parts hurt. I had such a bad pain down my leg(on the antibiotics) . Worst pain i ever had. from the hip, right down to the foot. I went over to a site and looked up the pill. You ought to go over and look up the one you took. Macrobid? I'm going to go look at that one. ASKAPATIENT.COM. Its patient reviews of medicines. Very interesting. The pill I took was bactrim. Horrible reviews, I had every symptom of all the reviews. Even made me have intense panic. You know I have had antibiotics off and on thru life, for tooth things. Never, ever had problems. They are making them nasty these days.
Dont even know if i had yeast? no one would test for it. Lazy doctors. Diflucan, nah, thats a breeze. I was scared of it, but its not bad. Put off taking it for the longest time.

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Re: hey, I did this

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