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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


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


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


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

New girl from the states

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New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 5:21 am

Hi everybody. I have been suffering from vulvodynia for as long as I can remember. I am only 22 years old, but I have never lived without intense pain upon penetration (even when I was a young teenager and trying to insert tampons). I am kind of at the end of my rope at this point and I have found it very difficult to get over my spells of depression lately. I am incredibly lonely and I feel absolutely hopeless. I decided to finally join one of these support groups in hopes that I can work through my emotional and physical pain alongside others who understand. This condition is absolutely awful, but I am glad to have found a place with empathetic women who are working hard toward finding a cure! I look forward to sharing stories and treatments with you all.


Posts : 14
Join date : 2011-03-14
Age : 29
Location : Washington, USA

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Re: New girl from the states

Post  naomi on Mon Mar 14, 2011 9:15 am

Hi hun!

Welcome to the forum...you're among friends here so no thinking you are on your own anymore! I felt like that about 2.5/3 years ago and struggled away until I came across this forum cruising the health sites etc for any help I could find. Sebby (admin) is a god send for setting this website up as there seems to be little accessible help out there.

We are all working on this condition together on here.....crap days, crappy days and better days! And believe me we can all relate to the feelings of despair, hopelessness and depression...know that all too well Sad

There are loads of treatments that are possibilties and these are the girls to get to know! Since I joined in July it has been my main place of mental relief.

The regulars on here are a bunch of nutters but completely harmless Smile heheeee, I think they are all lovely and we do have fun on facebook (message Sebby the Admin or me on here and I'll get you on the secret group on facebook where were are all real girls woooooooh Smile there's about 20 of us on there now, all spread across the globe, so there is always someone around to chat to if you are struggling...or talk about general rubbish Smile It is a secret group so no telling the world about ur La-la problems Smile

I hope ur day is good. And dont forget you're not alone in this anymore!!

Naomi xxxxx

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Location : Cheltenham

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Re: New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 7:12 pm

Thanks so much Naomi! I actually JUST deactivated my Facebook after having it for 5 years because I was finding that it was only bringing me down (i.e. always reading about everybody's perfect lives and love lives). If I decide to reactivate it I'll definitely join the group!


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Re: New girl from the states

Post  Sebby (Admin) on Mon Mar 14, 2011 8:02 pm

Welcome to the forum Smile

Yes we can all relate to how you are feeling. This condition is so isolating as you don't feel able to talk to many about it like you would if your arm hurt!

I too have always had pain witht penetration, during sex, tampon insertion (since I tried at 13) and medical exams. This does not mean that it will be any harder to treat just because you have had it for a long time.

I have dealt with feelings of utter despair and there are days when I just don't feel I have the strength but the women I've met on the forum help to refill my strength bottles..lol I really dont know where I got the term strength bottle!

What treatments have you tried and what treatments are you currently on?

Im going down the route of pelvic floor biofeedback which may take months to take effect but I am plodding on and remaining hopeful

I have also been on 300mg on Pregabalin for about a month and have noticed a reduction in general pain and flare ups last a day or two rather than several days

I am also spraying the vulval area with water after urination and applying vaseline as a barrier against rubbing which Im also finding helpful

If you wish to joing the facebook group you can always set up another fb page even with another name, just to allow access to the group

Take Care


Sebby (Admin)

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Join date : 2009-12-03
Age : 37
Location : London UK

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Re: New girl from the states

Post  seagirl88 on Tue Mar 15, 2011 6:40 am

Thanks Sebby. It's so nice to know that there are other people who are going through the same thing! Also, creating a Facebook account under a different name is a good idea-- I might do that. As far as treatments go, I've had a hard time admitting to myself that this is a problem that isn't going to go away on its own. Therefore, I probably haven't tried nearly as many treatment options as most of you all have. I have definitely gone down the route of oral antifungals a couple of times (because I was either diagnosed with a yeast infection or BV) and those of course didn't do anything. I then used Estrace cream for a while in combination with a steroidal cream, but those didn't do anything either. I JUST finished a treatment prescribed to me by a naturopathic doctor where I douched with chamomile tea and slippery elm bark and vaginally inserted both natural antifungals and probiotics. It may have helped slightly but not significantly.


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Re: New girl from the states

Post  Mouse on Wed Mar 16, 2011 8:14 am

Hey hun and welcome!

We're all here to help =) We have a lot of fun on the FB page and it's a great place to have a whinge also! So give that some thought.

It's really easy to get down, this thing can be soul destroying. Have you got a therapist? Mine virtually saved my life, I was circling the drain six months ago. Now I meditate, have radically changed my diet, do PT, aim for good sleep hmm and try to destress - that's a work in progress. Most days it works.

In the mean time do you have a pelvic pain specialist or a vulval specialist? Check out Sebbys consult with Howard Glazer there is really good advice on there.

Sadly there are a lot of women your age on here but all of us are desperately seeking a cure. Making a commitment to finding that is the first step so well done! Ideally living the cure rather than the disease - sounds good in theory doesn't it!

I hope you are having a good day. Take care


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Re: New girl from the states

Post  seagirl88 on Wed Mar 16, 2011 7:59 pm

Thanks Vicki! I actually just made an appointment with a therapist for this coming Monday. I've gone to therapists before about dealing with my anxiety and depression, but I've always been too embarrassed to mention my vulvodynia. This time, I'm just going to let it all out! I also booked an 8 hour meditation orientation for the end of May, so hopefully that helps.

Currently I'm still going down the route of diet change (and a possible upcoming detox and candida treatment). My plan is to spend the next 3 or so months doing that. If I don't have any significant improvement I will definitely look into going to a pain or vulva specialist.

Thanks for your support!


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Re: New girl from the states

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