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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
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.

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


Pretty much cured!

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Pretty much cured!

Post  Mariahopes on Thu Mar 05, 2015 8:53 pm

Hi Ladies,

I felt it was important for me to share my progress with you all, considering it has been almost 2 years of utter hell!
My issues started following the natural delivery of my little girl in March of 2013. She was basically too big for me and the labour and subsequent delivery lasted 4 days!! 4 bloody days!!

I ended up with a large episiotomy and a manual delivery of the placenta- ouch! I never felt right afterwards and saw so many specialists- yet none of them could see or feel anything wrong.. but I would sting like mad- particularly when I walked!

I spent a long time tracking down Prof Wendy Reid at the Royal Free in London. She diagnosed me with 'dodgy skin'.. poss on the Lichen Sclerosis spectrum but she couldn't be sure. She said all my symptoms were coming from my incredibly tight pelvic floor muscle, my pudendal nerve was inflammed and irritated and this causes the stinging and tingling that I often experienced. She referred me to an excellent physio called Helen Forth. I have been seeing her for 3 months now and have NEVER felt so good. I am not totally cured, but a combo on 150mg of pregabalin, some mid steroid ointment for the skin, and a shed load of physio has gotten my pain down from a level 8 on most days to just about a 5 ONLY when I get my period! AMAZING!!!!!!

I know how much any pain in that area can affect self-esteem and self-confidence, I urge anyone really struggling with this to seek a really qualified professional with experience in treating pelvic pain. I know it is incredibly hard but you must have the patience of a saint as this thing does not go away over night and requires a significant amount of work to get on top of. I can have pain free sex.. i'm a bit of a vice but a bit of deep breathing and a couple of glasses of red wine goes a long way towards helping that!

I think the trouble with pelvic pain is that although it can present itself in many similar ways, there is no one cause for it, and subsequently, no one solution. Seeing an experienced practitioner is vital!

Be patient, stay strong, be positive, because it can and it WILL get better.

So much love to all of you... We are amazing women!
xxxxxxx


Mariahopes

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Re: Pretty much cured!

Post  Mariek on Mon Mar 09, 2015 11:44 pm

Thank you for the uplifting words. I hope you are right.

Mariek

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Pretty much cured

Post  Jo44 on Wed Mar 25, 2015 8:36 am

Hi Mariahopes

It's great to read of your progress. Please can I ask what steroid ointment you have been using as I have been on Pregabalin 150mg & Dermovate applied twice a day. I still have soreness & redness below. I've been using the cream since 6th Feb this year!

Did you have soreness too? Did you have any lower pelvic discomfort? I do & I wonder if it could be tight pelvic floor muscles too!

I'd appreciate your advice.
Many thanks

Jo x

Jo44

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Re: Pretty much cured!

Post  Emmae394 on Tue Jun 30, 2015 4:09 am

What is this "physio" that everyone is speaking of? I'm new to this forum and am seeking out any options to help manage my PVD!! Currently on 30mg of Nortriptyline, daily use of an estrogen/lidocaine compound cream and self pelvic floor muscle therapy with a therawand. All prescribed and suggested by my doctor who specializes in vestibulodynia. I'm 21 years old and have been dealing with this ever since recovering from chronic uti's for 2 years. Never thought I would have issues like this!

Emmae394

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Re: Pretty much cured!

Post  Georgia H on Thu Jul 09, 2015 5:23 pm

Hi guys! I thought I would add to this. I also saw Wendy Reid .. I owe her my life. I also live completely pain free now, she was a godsend. I recommend anyone in London to try and get in to see her. If you can afford it, pay privately, otherwise, you can get in on the NHS if you beg your GP.

Georgia H

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Re: Pretty much cured!

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