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» I don't know what to do anymore
Today 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.

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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


Vestibulectory removes 85% of pain, Birth removes 15%

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Vestibulectory removes 85% of pain, Birth removes 15%

Post  pangea on Sat May 27, 2017 8:27 pm

I was diagnosed in 1999, at 21 years old, right when my sexual life was starting.  I'm pretty sure it started after a reaction to spermicide on a condom, which I thought was a yeast infection, so I treated with a lot of creams. It was too much for my skin. It is strange to write these words now, at 40, and revisit what was a very depressing, painful part of my life.  To get to the point, after years of trying everything under the sun and the redness and papercuts getting progressively worse, I decided to get a vestibulectomy after 10 years of VV.  The surgery removed 85% of the pain, which is a great success.  I could have sex, and for the first time enjoy it without needing a lot of alcohol to numb the pain.  After a year of good sex, it was time to make babies, I've made two!  Because of the lack of skin to stretch, I tore significantly, but that was like booster surgeries each time when getting stitched back up.  These free 'booster' surgeriges 'reorganized the skin again, and actually removed the remaining 15% of pain, and now I actually have trouble NOT orgasming.  It all seems so normal now, that I forget to terrible 10 years of my 20's.  So that's the short version, here's additional information.

Though I live in Phoenix where a vuvlar specialist lives, I opted to fly to Portland and get the surgery done by a very experienced female doctor at the teaching university there.  She has been doing these surgeries longer than most any other gyn, and I liked that she probed me gently as I feel a good surgeon should, and was a female. I kindof like that, emotionally.  Even after flight and hotel it was cheaper than doing it locally.  I stayed at a hotel there one week with my mom as I recovered

Equally important in my recovery is the associated intolerance of wheat, milk, and eggs, which if I eat for two weeks continuously will make me go down in a ball of pain on the floor after urinating and for the next 5 hours, even if I'm at a mall, I discovered.  Just like the scene with Tom Hanks in the move The Green Mile.

Well, my babies are home so I have to run! But isn't that nice to read!? My babies that I made by having sex without pain and whose birth led to an even better sex life are home!  

It took me a long time, but it gets better. Keep at it, keep researching, and it'll happen for you, too!

Be strong and stay away from negativity.

Love,

S.R.

pangea

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Pangea,

Did you have a full vestiulectomy or partial? Also is your pain generalised or provoked?

sj17

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  Tired89 on Wed Jul 05, 2017 10:28 pm

Wonderful story! I'm so happy that this terrible journey is over and that you can have a normal life...something all of us ladies with this condition dream about. I also have the same questions as Sarah too though. I have vestibulodynia with provoked pain. It seems I've always had it. I'm curious about the outcome of surgery when the condition is like mine.
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Tired89

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

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