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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


out of ideas

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out of ideas

Post  cremeans24 on Mon Jun 30, 2014 9:57 pm

Hi there,

I found out while I was pregnant with my son about having vulvodynia. I always had trouble having sex but couldn't ever figure out why and it wasn't and still isn't anything I feel like I can talk to any one about. All I am ever told is that I just have a low pain tolerance and nothing is wrong because all test came back normal. In 2012 I got married to my husband after being together for a year and to this day we still have a little bit of issues because we didn't know what was going on but I didn't like sex at all I mean who would like pain that made you cry and so we were surprised when I got pregnant because we hadn't been really trying and not having regular sex but it was a really happy time for us and my son was born on June 13th of this year he is perfect but now I wonder where we go from here. About half way through my pregnancy we stopped being intimate because it hurt me so bad and I have had a history with depression and boy is it back now. I'm working with my OBGYN once i reach the 6 week mark to see if I can get back to a more normal intimate life with my husband, I guess what I"m trying to find out is did anyone else feel like less than a normal woman or am i just plain crazy. but i feel like I don't know what to do and I know my husband doesn't fully understand what I am going through and I'm just trying to find a way to feel better about myself and have people to talk to that understand and can help me through this time as i have no one in my life i feel i can talk to about this that won't essentially make fun of me.

cremeans24

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 2:47 pm

Did you have your baby yet or are you still pregnant?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 4:41 pm

Yeah my baby was born on june 13th. Overall once i had the epidural the birth was not as bad as the doctors thought but i did tear pretty bad and had to get more meds so i couldn't feel them stitching me back up. I couldn't get out of bed that first 24 hours on my own though they think that was the meds. But i will say the discomfort after birth was pretty bad and is just starting to lessen after two weeks but if i move too much i feel it.

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 4:56 pm

Supposedly after a vaginal birth (and the recovery), your vulvodynia becomes less intense.  Maybe wait and see what happens after?  Where exactly does it hurt? And is it all the time or just upon penetration?

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 5:02 pm

Its only ever been during sex, or exams it is why i never really knew there could be something wrong because i had heard that for some women sex was always painful and i never had any abnormal results, utis or infections no stds so i just thought it was normal because no one had answers for me and i had never heard of vulvodynia before

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 5:33 pm

It sounds like you have provoked vulvodynia, like me.  Basically meaning that the only time you have pain is when you have sex.  And only in one spot.  I would go to a specialist and not your obgyn as their primary focus is babies and not really problems.  The good news is you can be fixed but you're going to be doing process of elimination- creams, pills, etc.  I had the surgery back in December 2012 called a vestibulectomy, but this is a last resort surgery and pretty much ONLY for provoked vulvodynia.  But they are going to want to try a less invasive treatment before they come to that.  You can also try women's physical therapy and see if it helps.  Some people claim acupuncture works.  But my best advice is to see a specialist who works closely with vulvodyna.  Where do you live now? 

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 6:29 pm

I live in michigan, and the obgyn only caught it after i went to her for being pregnant so im less than a year into this and couldnt do treatment while i was pregnant so i am just trying to figure this out as i go with help from someone who understands what i feel and i can stop feeling so hopeless

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Re: out of ideas

Post  Alana3 on Tue Jul 01, 2014 7:17 pm

Don't lose hope I suffered for about 7 or 8 years before I got my fix so totally understand.  Maybe try someone at the University of Michigan if you're close or if there's a Cleveland Clinic near by you could try them- I just went to the one down here in Florida for a second opinion on something irrelevant to vulvodynia, and they were great!  Keep in mind that this isn't a disease no one knows about, it's just difficult to find a doctor who's not an idiot.  I would google vulvodynia specialists + Michigan and see what comes up.  I actually did it and I saw there was a vulvodynia clinic! (see below) maybe go that avenue!  Very Happy 


https://www.google.com/?gws_rd=ssl#q=vulvodynia+specialists+%2B+Michigan+

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Re: out of ideas

Post  cremeans24 on Tue Jul 01, 2014 9:11 pm

Thank you that helps

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Re: out of ideas

Post  Alana3 on Wed Jul 02, 2014 1:38 pm

No problem- let me know what you decide to do Smile But when you're calling around make sure they put some kind of emphasis on the vulva! I can show you my doctors website so you can get an idea

http://www.jaytrabinmd.com/home.html

Notice how vulvodynia is the first thing you see on the page.  My doc took a special interest in it and he's been my lifesaver!

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Re: out of ideas

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