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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

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

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


Pregabalin/gabapentin

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Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 6:53 pm

Hi all,

Quick question - have any of you had any success using pregabalin or gabapentin to treat vestibulodynia? My gynae wants me to go on pregabalin but I only have localised provoked pain and can't find any evidence to suggest it works for this. I'm not prepared to go on a drug with side effects if it's never worked for anyone!

X

Rose86

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Re: Pregabalin/gabapentin

Post  Alana3 on Tue Feb 18, 2014 7:38 pm

I used it for provoked but it didn't work for me but you don't know until you try. You can always get off it there shouldn't be lasting side effects so once you wean off you should be OK. But if it works that would be cool.

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Re: Pregabalin/gabapentin

Post  alessandria on Tue Feb 18, 2014 8:55 pm

The only clinical trial examining pregabalin for vulvodynia was discontinued due to low enrollment, so there are no real studies on whether it is effective or not (there are anecdotal reports of people getting better on it, but mostly in the case of generalized and unprovoked). As far as gabapentin goes, there is a multicenter trial underway right now in the US to see whether it is effective specifically for provoked vulvodynia. There is evidence to suggest it works well in people with generalized and unprovoked vulvodynia, at the very least. However, unprovoked and provoked are thought to be caused by different mechanisms, so what works to treat one might not help the other. There just isn't a ton of data, which means it might work, it might not. Both of those drugs have been under a lot of fire lately for not actually being helpful in a ton of different pain disorders, despite prevalent off-label use. Doctors have been prescribing them for plenty of things under the rationale that you never know until you try, but it has ended up hurting people. So...a lot will come down to whether you feel like its potential risks are worth it, and that's a personal call.

A question, how has physio been going? Did you end up getting botox? I think as long as you have noticeable pelvic floor dysfunction, I'd continue working on that -- it DEFINITELY can be a huge cause of provoked pain in particular, and it's hands down the best route to go with if side effects are a big concern of yours. If you are not super concerned about side effects, then the drugs could totally help out and should be up for consideration. Good luck!!

alessandria

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Re: Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 9:26 pm

Hi! Yeah the gabapentin study came up in one of my searches, but god knows when we'll see the results of that one! As for the Botox, I didn't go down that route in the end, my new gynae doesn't seem keen on it. But I'm certainly keeping my mind open to it. As for the physio, I've been using a biofeedback machine and dilators since October and haven't noticed any change in my vestibule pain, even though my resting tone in my pf muscles has gone down. I'm still unable to relax the pf muscles when I'm thinking about something else though so maybe that's the problem. I'm reluctant about gabapentin and pregabalin because of the side effects, however I would be prepared to try topical gaba/pregabalin if I could get it prescribed in the UK. I'll be asking my gynae at the next appointment if it's an option.

Rose86

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Re: Pregabalin/gabapentin

Post  JemimaSurrender on Mon Mar 10, 2014 7:12 pm

I used Pregabalin for about eighteen months I think, and for a decent portion of that I did seem to be considerably better and sex was almost bearable, but it did return eventually. I am now on Gabapentin, and have been for about six months and have had no success so far!

I did see a consultant today and he said they rarely work for the kind that I have as it's for nerve pain rather than provoked. Another success for the NHS then, thanks guys!

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Re: Pregabalin/gabapentin

Post  Rose86 on Thu Mar 13, 2014 10:41 pm

Hi Jemima,

You say the pregabalin worked for a bit - do you have localised provoked pain of the vestibule or something else? Also how did you find the side effects and also coming off it at the end? x

Rose86

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Re: Pregabalin/gabapentin

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