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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
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» 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?
Sun Apr 22, 2018 4:52 am by CatJones

» 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


Has anyone considered or had surgery (e.g. vestibulectomy)?

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Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  takoyaki on Tue Sep 27, 2011 11:59 pm

Hello all. I am thankful that this forum exists. I've been a lurker for a few months, but I feel far less alone knowing I'm not the only one going through all of these symptoms!

My Vulvodynia symptoms started almost six years ago when I was 25, out of no where. For the first two years, gynos and other doctors made it seem like it's all in my head, that I was frigid (one gyno told me I should go out and get drunk before the next time I had sex!), that I should go see a sex therapist (who ended up amplifying the message that it was in my head, etc). I was finally diagnosed by a colleague of Andrew Goldstein--I cried when she told me what I was feeling was real and that she knew what it was. My hormones were out of whack because of hormonal birth control pills, which I stopped immediately (first signs of relief immediately followed), and applied a compounded estrogen/testosterone cream she prescribed. I started to feel better after about six months.

But two years ago, it all started getting worse again. I couldn't afford Goldstein's office because they don't accept insurance, so I started seeing Kamal Hamod at Johns Hopkins this past January. In these last 9 months, he's had me on gabapentin 6% cream, low-oxalate diet/calcium citrate, elavil, and sitz baths. I've also had a pudendal nerve block. Relief at first but then not. I've also been doing physical therapy at Georgetown since July--I can feel it benefiting my internal tightness (which was compounded by muscle pain issues in my hips, legs, and lower back), and want to continue the external work. The internal work (massage and dialators), has been difficult, primarily because the lube burns me externally. Sure enough, my vestibular area has been tearing again.

I've shared all of this because Hamod is now recommending surgery--a vestibulectomy. I go back next month to discuss. I've read the varying success rates (which seem to be affected significantly by age of patient?), but I'd like to communicate with women who have considered this option, how it went if they chose to have it, or why they chose to decline it.

I see no hope for improving my external problems of tearing and burning. The burning has in the past month and a half been traveling "up" my vulvar area to my clitoris, which scares me. I feel like I'm willing to try anything at this point.

Thanks for reading.

takoyaki

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Re: Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  Sarah001 on Fri Sep 30, 2011 5:22 pm

I think most of the ladies on here have generalised V which rules out surgery as an option. Also lots of us are from the UK and it's not easy to get surgery of that kind here. Try looking on www.vulvarvestibulitisrelief.com and go through the case studies, VVS is the ony type of V suitable for surgery so there might be some women on there who could help you.
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Sarah001

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