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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


CONFUSED !!!!!!!!!

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CONFUSED !!!!!!!!!

Post  helpme123 on Fri Oct 14, 2011 6:21 pm

I am not sure if I do have vulvodynia, I need to rule out everything , my story ....

I was taking Nytol , OTC sleep aid for years every nite for sleep, and back in July 2009 , for the entire mth of August and I stopped taking the Nytol , 2 weeks after I started to have burning/itching on outside of vulvo area close to the urthea area , I didnt pay too much attention why it was dng this , by the end of August I was back home from my vacation and my family Dr gave me a steriod cream , I applied it one day and it was gone away , but at the same time I started back the Nytol , and nevcer had a promblem after, UNTIL went back on vacation to Florida this time for all winter , I just quit my job and was now semi retiring so I decided to stop taking the Nytol for good, this was Dec 2009 , again same thing happened to me after 2 weeks, by the end of the Mth it got really bad , I was in extreme pain , I couldnt wear any clothes at all , it was as if I was sitting on top a stove and someone threw acid on an open womb , I couldnt sit on it , it burned/iched, and at times it stung. I went to see at least 5 GYN , went to ER , seen other Drs at Medical clinics , while I was on Vaction , they did every test under the sun , ruled out anything and everything , I never once thought Nytol was the culprit . At every Vaginal examine it was extremly painful by any touch , I was given antibiotics for no reason , only by assumptions , they thought it was vaginitis , etc.. , I was given several types of steriod creams, Hydrocodone (80 pills) , I tried Estrogen cream for 7 weeks, I was on Gabapetin for 2 weeks, and a Benzo Klonopin , well as time went by I was finally able to wear jeans , had no problems sitting , walking as b4 I couldnt even walk it was so bad. It was abt 2-3 mths later it seemed to get better , I had no problems getting a pelvic exam , touching that area , BUT was getting a different kind of pain as I was on Bnezo Klonopin and was getting now burning sensations off and on from one location to another , come and go , but no stinging , but was still itching and at that time I had NO problems scratching that area when needed . Fast forwarding now , I was told to stop the Benzo Cold Turkey after taking it for 4 1/2 mths , and things hit the ceiling , I was in severe withdrawl, well now its 18 mth slater and I still have withdrawl symptoms as I seen a neruologist he said Benzo deplete the GABA and changes the Brain Chemistry. Well heres my confusion now , since Decemeber of 2010 I started to get that stinging back down there and its so bad that when I wipe with Toilet paper , just by a slight touch it triggers stinging , but it triggers stinging all over my body NOT just there , it also triggers a headache, weakness, pressure around my throat , and burninging all over my body , as these symptoms are not always cuased by any triggers its mostly like this on my body all over as its caused from Beno Withdrawl, or its part of my recovery. So my Question is this do having Vulvodynia cause your entire body to sting or burn by any sense of touch on the vulvo area, I dont have any internal issues as I did the first time , its all around the surrounds of the vulvo area. I am worried I had vulvodynia the first time and I recovered from it and now its back again , or its caused from what the Benzo did to me. Any thoughts , I would appreciate it . A final note I dont have any problems sitting , wearing tight jeans , or internal problems , but my worst symptom is stinging extremly bad , it does come and go with intensity , and a few times its hardly noticable unless its triggered !!!! at times its nothing at all but until I scratch anywhere that area or wipe with Toilet paper it triggers the symptoms. Is it Vulvodynia? Thank you for reading this .

Sincerly
Helpme123

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Re: CONFUSED !!!!!!!!!

Post  Sarah001 on Sun Oct 16, 2011 1:13 pm

Hi and welcome, no vulvodynia doesn't usually cause full body pain but something else causing full body pain can cause V. It's best to get more advice about the full body problem and see if that's the source of V for you.
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