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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 …

Comments: 1

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.

Comments: 1

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

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


Pudendal Nerve Blocks and Botox for Vulvodynia - Round 2

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Pudendal Nerve Blocks and Botox for Vulvodynia - Round 2

Post  sgw11 on Tue Feb 21, 2017 5:08 am

Hi everyone,

I just thought I'd share my experience with pudendal nerve blocks and botox for my provoked vulvodynia. For those who haven't seen some of my other posts, I've had vulvodynia for about 3 years now, and have tried many different treatments - amitriptyline cream, lyrica and amitriptyline oral medication, mona lisa laser, physio, cupping, chinese herbs...and I think that's about it. I was recommended surgery, but I told my gynaecologist I wanted to exhaust all options before I went down that path. She referred me to Professor Theirry Vancaille in Sydney, Australia (I'm originally from Melbourne) for pudendal nerve blocks and botox. First he examined me to see if I was a candidate and told me I was, then I had the procedures done the next day.

I had my first one done in April last year and it changed my life, I can now have pain free sex, although I still get the irritation for a day or two afterwards most of the time, although sometimes I don't! I do still have some bad days, which are usually exacerbated by drinking alcohol the night before. The effects of the procedure is supposed to last around 6 months, but it lasted longer for me. Towards the end of last year I noticed the pain started getting worse again, so I re-booked in with Theirry and he did the procedure again in January this year. Once again I pretty much instantaneously experienced the benefits of the nerve blocks and botox.

I know that everyone is different, but may I suggest for those looking for other avenues to explore to ask your gynaecologist about these procedures. It costs about $1500 all up including the anaesthetists fees. Feel free to message me with any questions!

Steph x

sgw11

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Re: Pudendal Nerve Blocks and Botox for Vulvodynia - Round 2

Post  mary jane on Thu Jun 08, 2017 12:27 pm

pretty cool and glad it worked !
what were your symptoms ?
avatar
mary jane

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Re: Pudendal Nerve Blocks and Botox for Vulvodynia - Round 2

Post  Hopeitworks on Fri Aug 04, 2017 7:14 pm

sgw11,

I am so HAPPY for you! I have been thinking my vulvodynia is caused by nerve but no one will listen to me. So I had a Vestibulectomy a week ago because I felt I was out of options. Thank you so much for sharing your experience and if I need to I will figure out a way to get a nerve block.

Hopeitworks

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Re: Pudendal Nerve Blocks and Botox for Vulvodynia - Round 2

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