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Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 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

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 …

Comments: 0

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 …

Comments: 0

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


NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  shay on Sun Jan 09, 2011 12:11 am

I HAVE RECENTLY SEEN A DOCTOR WHOSE SEEMS TO HAVE THE CARING AND PATIENT PERSONALITY THAT I NEED RIGHT NOW AND SHE HAS STARTED ME ON ELAVIL AT NIGHT TIME AND A COMPOUND CREAM MADE UP OF NERVE BLOCKING, MOISTURIZING AND PAIN NUMBING MEDICATIONS ALL IN ONE CREAM.

SO IM HOPING FOR THE BEST...............

P.S HOW DO I FIND THE FACEBOOK PAGE THE ONE THATS PRIVATE

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Mouse on Sun Jan 09, 2011 5:49 am

Hi Shay good luck with the new Doc, it sounds promising!

You need to send Sarah ie admin, your email address and she will add you Smile

Vicki

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nervous about side effects of ami

Post  shay on Sun Jan 09, 2011 7:50 pm

is it wierd for me to believe i will get better like im almost nervous to try this new treatment or maybe im afraid of it not working. Im seriously trying not to allowed my anxiety to overwhelm me because i believe that it is a mind over matter thing that requires faith.


idk.................. i started it last night and the cream didnt burn or irritate which is good and the little pill of ami only made me extremly sleep instantly and i know that weight gain is a side affect and i actually thought i can not gain weight however that quickly went out the window as a dumb moment lol like i would rather be 5000 pds and healthy versus my normal weight ( fingers crossed) .

is there any suggestion on how to keep the extra weight off

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Mon Jan 10, 2011 2:33 pm


Good luck with your new treatment Shay, I have messaged you back about the facebook group.

As for the weight, lots of exercise would be my advice..hard I know when you are dealing with pain. I find a good walk always does me good

I dont put weight on that easily cos I get anxiety and one of my symptoms is not eating much if Im anxious lol only good thing is I keep my figure but like you said I would rather put on a bit of weight and be healthy in mind and body

Take care
xx
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Mon Jan 10, 2011 7:49 pm

I've been on 50mg of Ami since August time last year and have put on about 6lbs. It slows your metabolism down and can also increase the appetite so not great! I haven't had any changes to my appetite but it's definitely done something so it must have slowed my metabolism down. It doesn't help that I can't do much though because of other problems so if you're able to exercise you may be able to avoid weight gain. Pay attention to what you eat while you're on it and you'll soon figure out if it's increased your appetite. For me it's been a disappointment because it hasn't got rid of the pain but I have to take it for Fibro so I get decent sleep.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  [Sara] on Tue Jan 11, 2011 4:34 am

I had a really bad reaction with Elavil and had to stop taking it within a few weeks. It actually made me extremely depressed and "robotic", and it really scared my husband. I mean I was already depressed having this condition but with the elavil I think it's safe to say it pushed me a little over the edge and I had suicidal thoughts and stuff.

But don't let that discourage you. I've read about plenty of women who did really well with it and it ended up helping their symptoms tremendously. I just don't think anti-depressants mix well with my body chemistry; I had a bad experience with them in high school when I went through a rough part of my past. Both times using anti-depressants I've had bad reactions. I did think it was odd that my gyno put me on anti-depressants for my hoo-ha, but she explained that it has been shown to help block the pain and relax the pelvic floor.

Hang in there. I pray that this is the answer for you! cheers

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Tue Jan 11, 2011 1:26 pm

Ami is best at blocking pure burning, when I told my vulvar specialist it wasn't helping me much because most of my pain is rawness she said anticonvulsants such as Gapapentin and Pregabalin are better options because they're more sophisticated and deal with various types of pain so if the Ami doesn't work there are other options. Ami made me woozy to start with but you can't actually tell I'm on it anymore except I find it hard to wake up in the mornings.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Tue Jan 11, 2011 7:53 pm


Thats interesting most of my pain is rawness seems the anticonvulsants would be better suited.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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