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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.

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

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


Is Purdenal nerve entrapment the cause of vulvodynia?

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Is Purdenal nerve entrapment the cause of vulvodynia?

Post  Hopeitworks on Mon Sep 04, 2017 12:16 am

I have had vulvodynia for 10 years and just had a thought. Maybe my thigh pain is causing my pelvic pain. I have burning sensations on my thighs and around my waist. The more research I do makes me believe I have Purdenal Nerve entrapment. I've never had an MRI but I'm going to fight for one.

Anyone on here figure out an entrapped nerve was the cause of vulvodynia?

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Re: Is Purdenal nerve entrapment the cause of vulvodynia?

Post  tinkerbelle2 on Sat Sep 16, 2017 12:36 pm

10 years Sad No I really feel for you there. I've had mine 7 years. It's an awful upsetting thing to live with, but I believe with positivity and support we will all get there. Even if we have some good days, we all deserve to have a good life despite this.
I have heard a few women mention the pudendal nerve but I haven't done a lot of research about it myself. One thing I have noticed which is odd, is that often after a bowel movement (sorry TMI!) I am like on fire!! So I have wonder if there is some sort of link there with the muscles/nerves being strained/tensed...
Have you tried physio?
best wishes, xox
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Re: Is Purdenal nerve entrapment the cause of vulvodynia?

Post  mary jane on Sat Sep 16, 2017 8:24 pm

Hopeitworks wrote:I have had vulvodynia for 10 years and just had a thought. Maybe my thigh pain is causing my pelvic pain. I have burning sensations on my thighs and around my waist. The more research I do makes me believe I have Purdenal Nerve entrapment. I've never had an MRI but I'm going to fight for one.

Anyone on here figure out an entrapped nerve was the cause of vulvodynia?


Hi, I really REALLY doubt you have pudendal nerve entrapment. It's extremely RARE, so unless you've had multi-level surgery or some type of congenital issue it's highly unlikely you have PNE. Most likely you have mild neuralgia. Also, very few people have been cured by that pudendal decompression surgery. It's simply a bunch of QUACKS mutilating people. I have read of no cases being cured, not even in Nantes. They have a low success rate and they stopped performing this surgery in MayoClynic.

Try and read up more reviews on Antolak and co as well, and see just how many have been made far worse.


I also have itching and sharp pains around my abdomen. It's nothing more but referred pain from the vulval nerves.
I also had coccyx pain and full blown sciatica at some point. It's a central nervous system problem.

Sigh.


Nerve pain is a complex beast and different things work for different people. I hope one day someone can find a solution for all of this


there is a VERY interesting story from a forum user on TMS forums called "ezer". He got PN pain from falling on a marble floor, had 2 PN surgeries and in the end he found success using TMS work
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Re: Is Purdenal nerve entrapment the cause of vulvodynia?

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