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» 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


Vulvodynia and IC...and a question

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Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 9:17 am

Hi there! I was recently told I have vulvodynia along with IC (interstitial cystitis). It wasn't a surprise to me as I've been dealing with these symptoms since I was a little girl. But here is what I'm wondering...is vulvodynia really the right term for me?

You see, I don't actually experience pain in my vulva. I experience it inside my vagina. All the descriptions I've read of vulvodynia say its around the vagina, not inside. I experience burning, pain, and discomfort inside, especially during sex. However I don't believe it to be vaginismus because I've always been able to use tampons and can have sex easily, or start to anyway...I have no troubles with my husband getting inside. It just hurts like hell when he does.

So is that still vulvodynia? I want to be as educated as possible to help myself. Along with these, I have fibromyalgia, depression, generalized anxiety disorder, and adult ADD. With all these physical and mental ailments, I'm used to being incredibly well-read about everything and making educated choices about my challenges. So any opinions on if vulvodynia seems to be the most correct diagnoses would be helpful...I know you guys aren't doctors. But anything helps Smile thank you!

Rachelle

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 4:01 pm

Hmmm, interesting question. I've wondered in the past where the dividing line between vulvodynia and "something else" falls! Weird question but how far inside does it hurt? I do have pain round the vestibule & sometimes further out too but my sorest spot has always been about one inch inside along the back wall of my vagina. Have you had a poke about yourself to see if you can identify any specific sore areas? I only ask because when I try & have sex it feels like everything is hurting inside & it's hard to tell exactly where the pain is coming from, but when I examine myself it's actually mostly coming from that one part. Nothing further in than that actually hurts inside. I have a theory that all the pain I now experience originated & radiated out from that one spot.

If it only hurts when the sore area is touched, that would be provoked vulvodynia (as opposed to unprovoked, which is pain all the time).
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Re: Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 7:02 pm

I did at one point do lots of "poking around" to figure out where exact pain was...I have one spot right above the opening that is intensely painful when touched. But when I have sex that isn't what bothers me...it is the feeling in the vaginal canal. Can it be stemming from that one spot? And is that still vulvodynia?

I find the most relief when I use lidocaine *inside* my vagina, not in the vulvar area...so I know that's where most of the pain is, besides from the one spot outside. And that one spot only hurts when touched, but the inside of my vagina hurts all the time.

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 7:36 pm

In all honesty, I don't know... vulvodynia is technically pain in the vulva, and the vulva is by definition the external genitalia only. However, it does seem that vulvodynia pain can spread all over the place.

Would be interesting to see if anyone else has mostly pain inside?

I know on the thread about instillagel (http://www.vulvodyniasupportforum.com/t670p15-lidocaine-beginner-question) a couple of the ladies were saying it worked best when they injected it inside.

Liz
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Re: Vulvodynia and IC...and a question

Post  everclear on Sun Feb 26, 2012 6:33 am

Yes. I just posted my own story in the New Members forum. I only feel pain inside, I don't have any external symptoms, so I wasn't sure if it could still be vulvodynia?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 10:04 am

I have pain inside!!! And I have been using lidocaine inside too. Please msg me if you see this because I'd love to chat. It seems like there were quite a few girls and women who had like my exact thing but they don't seem to come on here anymore and all the posts are over a year old Sad
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 11:51 am

Have you been tested for strep tinkerbelle?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 4:05 pm

No I haven't, is it something that may be worth asking to be tested for?
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 4:32 pm

It can cause internal burning...

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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 5:58 pm

My pain is unprovoked, but I can touch where I believe the pain comes from. On a clock it would be 6 and it feels like scarred tissue. On initial penetration it burns a little, but once its past that point it doesn't hurt at all. The next day or two are very painful. I have mostly itching and throbbing in the entire area includinding my clitoris.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Sun Dec 01, 2013 8:55 pm

Lonelyone mine feels a bit like scarred tissue also Sad
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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 10:27 pm

I had a vaginal hysterectomy in 2001 and wasn't diagnosed with Vulvodynia until 2005. The doctor I'm seeing now is the one who thinks the instruments used during my hysterectomy caused nerve damaged and it is in that area the skin looks scarred. Makes me angry just knowing this painful condition could have been prevented.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Jun 18, 2014 9:43 am

That's terrible! Most treatments in health care seem to come with terrible side effects, or create new problems! My mum had an op to have a polip removed from her uterus and then ended up with a prolapsed disc causing terrible back and leg pain and some permanent numbness! We think it's because they moved her roughly.
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Re: Vulvodynia and IC...and a question

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