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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 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

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

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


Flares? What are they?

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Flares? What are they?

Post  BpCookie on Thu Apr 04, 2013 4:18 pm

Hi dahlings, I read about women having *flares* all the time but in truth I'm not sure what a flare is. My burning pain is pretty constant, with an a few hours here or there with out any pain and my pain lvls fluctuate but I have only had a hand full of days with out any pain. (except for two glorious months when Lyrica actually worked). So when you talk about flare ups, what does that mean? Do you have days, weeks or months with out pain? Did you always have flares?

Thanks Smile

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Re: Flares? What are they?

Post  ringostarr26 on Thu Apr 04, 2013 7:33 pm

I actually had 3 years pain free!! don't ask me how because i have no idea! But after being diagnosed it took two years to get in under control where i would have weeks without pain and then 3 years pain free. Now I'm in a flare and it's been awful for over a month. what a drag. Sad

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Re: Flares? What are they?

Post  sassy26 on Thu Apr 04, 2013 11:01 pm

I was first diagnosed with vulvodynia in my teens and dealt with it for about two years. It went away all by itself for the next 2 1/2 years. I was able to have pain free sex and felt like my normal self again. Just this past week ive been feeling that familiar burn and it scares me to think that it could come back again. I hope this is just a flare and that I will still be ok.

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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 12:55 pm

I think it means different things to different women, I know some women on here have minimal pain daily and a flare is when that increases so they feel it all the time, for me it's when either my pelvis misaligns badly and increases my constant pain to a shocking level or when clothing irritates me and drastically increases pain so it's as variable as our symptoms. Didn't you say once you had a tight pelvic floor bpcookie? I seem to recall a conversation about it a while ago but I may have mixed you up with someone else!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 3:16 pm

Sarah hun, I have a bit of tightening on the upper left side. I went in for pelvic floor therapy one time and then my health ins. company refused to pay, so I never went back. I see women talk all the time about having back problems also, just like you had mentioned about your back being out of alignment. I've been meaning to see my chiro because my back has been horribly painful lately. I've had chronic back pain for 6 yrs and its only getting worse. My PS told me not to see my chiro just yet because I have been having different procedures done by my PS and if I do have pain relief, they want to make sure it was the procedure and not the chiro. *shrug*.

What you are saying about flares make sense. I don't have flares, not yet at least.

Ya know, since women speak of flares, I'm wondering if the vulva pain is connected to a Autoimmune Disorder. Like perhaps our body is attacking our good vulva skin cells? When I was seeing a vulva specialist and my vulva pain was resistant to all of her treatments, she wondered if I had an autoimmune disorder. Just a thought.

Have a good Friday. hugs
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sassy and ringostarr

Post  BpCookie on Fri Apr 05, 2013 3:20 pm

Hey girls, I'm so sorry about your flare. It must be so disheartening to go so long with out pain and all of a sudden *bam* the pain hits again.

Big hugs to you both
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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 5:31 pm

Do you know what bpcookie, I think once your nerve procedures calm down if they don't work you should definitely go back to the chiro and get your alignment sorted out plus you could always buy Heal Pelvic Pain by Amy Stein which tells you how to treat your own pelvic floor so it might work out combining the two if your insurance won't cover the pelvic floor part. Obviously your nerve procedures might help and this might not be necessary and I'm crossing my fingers for you!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:22 pm

Thank you Sarah Sweetie!!!! My entire back is screwed up. I have arthritis in my neck and also a thinning disc, I have scoliosis in my back, I injured my tail bone when I was a teen, something is wrong with my hip and leg and on top of that I have a burning bush, LOL. Im a freakin mess. I most def. need to see my chiro. and soon. He is fabulous and I could really use one of those hard core back massages (actually its more like back torture massages) but I still love em.

Anyways, take care dahling. hugs
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Re: Flares? What are they?

Post  Alana3 on Fri Apr 05, 2013 10:29 pm

Have you tried acupuncture? So worth it

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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:56 pm

Alana hun, no I haven't tried acupuncture for the vagina thing just the back pain, but it didn't work for the back pain. So have you done it for the vagina pain? If so, how do they do it?
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Re: Flares? What are they?

Post  Alana3 on Sat Apr 06, 2013 4:05 am

For hip back shoulder and vag. Didn't Work for vag (well the vaginismus it did) but no vulvodynia.it helps me more now but it works wonders I couldn't even turn my neck the other day and now I can Smile idk my lady researched everything tho not to say your person didn't but I throw so many things at her and she def helps me if not im very relaxed at least lol

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Re: Flares? What are they?

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