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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

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 …

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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: 0

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


CONFUSED !!!!!!!!!

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CONFUSED !!!!!!!!!

Post  helpme123 on Fri Oct 14, 2011 6:20 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  jules on Sun Oct 16, 2011 11:55 pm

Hello,

Your story is very similar to probably most of ours. I saw several doctors and tried several creams and gels before i was diagnosed with vulvodynia. Typically, a biopsy of the vulvar skin is taken to rule out a skin condition. Have you had that done? Vulvodynia is a nerve disorder. There are different triggers for different people. Usually most are triggered by sitting, working out and sex. These are my triggers anyway. Nevertheless, for me it is unprovoked so the burning pain is almost always present. I have received the most help from a pain clinic. Gabepentin can be very helpful for the burning. Doctors also prescribe Lyrica, Cymbalta and Amitriptyline for this condition. I had a horrible reaction to the Amitrityline. I'm currently on the other three meds. Different meds work for different people. This disorder can come and go. Years ago i had pain for almost a year and a half and it disappeared one day. It was brought on by a yeast infection. Now 20 years later, it came back and the pain is much worse this time around. Have you visited the site National Vulvodynia Association? They have a lot of information on this disorder. I'm glad to hear you are able to walk and wear pants etc. I have heard a number of women talk about itching. I don't have any itching. But, the creams and gels made my burning much worse. I recommend find a gynecologist to at least get the correct diagnosis. Meds can help with this disorder. I also recommend using fragrance free toilet paper and laundry detergent. Also, when you pee, have a little spray bottle and spray cold water on your vulva. that helps get the acid from the urine off of your skin. Cotton underwear are also recommended. Get to a doctor who has knowledge about this disorder. I don't know anything about the meds you were on. I had the same experience after i started and stopped Amitrityline and after trying to get off of Paxil...horrible withdrawal symptoms. Women also do physical therapy, nerve blocks and acupuncture. I've done them all. It's quite a battle. I have learned ways to try to keep the pain down. Right now, my Vulvodynia is tolerable. Good luck to you!

jules

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

Post  mmorgan on Tue Oct 18, 2011 1:32 am

Jules,

I'm intrigued by your comment. How old were you when you first had symptoms of Vulvodynia? You said it lasted for a year and a half then came back, how long have you had it going on this time around?
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Re: CONFUSED !!!!!!!!!

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