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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


so happy to find you guys!!

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so happy to find you guys!!

Post  Nic on Tue Apr 10, 2012 6:37 pm

just wanted to say hey to everyone, cannot explain how happy I am to find this forum. I'm 25 and have had provoked vulvodynia for over 6 years now. The pain began when I became ill and was treated for months with antibiotics for glandular fever. I was first treated for severe thrush but when this went away and the pain remained, I was sent to the GUM clinic several times , everytime being told I was fine. After about 2 years I decided to go private and saw a bupa gp who told me I had a chronic fungal infection and advised me to change my diet. because of this I saw a nutritionist who put me on the anti-candida diet, this helped a little but still sufferring I decided to go back to my gp. I was then referred to a counsellor who after a few sessions was the one who recognised my symptoms and referred me to my local gyno David Nunns who diagnosed me with provoked vulvadynia. Since then I feel like I have tried everything - all the creams anti - depressents, lidocaine, dilators, I saw the physio but on the session i said that I felt it was helping slightly ( to me this was from pain that was making me cry my eyes out to pain i didnt cry as much!) I was told that was all she could do and I was being discharged. The only thing I feel that has helped me the most was acupunture but I just cant afford to carry this on at the moment. When I was referred to my gyno I was so pleased someone believed that I was having pain and that there was even a name for it, after researching I found that he was also involved in a lot research. However (might just be my experience) but I have not been to the hospital for over a year now as I feel like I'm not really listened to and have been asked several times if theres anything Iv seen on the internet (is it not his job to tell me whats available?!)
I feel so up and down with vulvadynia its ridiculous, iv accepted that iv got this condition and have been in a relationship for 7 years with the most supportive boyfriend i could ask for but at the moment I feel like I'm starting on the down again. Everything else in my life is the best its ever been at the moment apart from my vulvadynia which seems to be at its worst. I have a new job as an air hostess and I'm not sure if its that my body is under a lot of stress and tiredness that this is effecting it but I'm worried that me and my boyfriend are going back to not being physical at all because I know its going to be so painful again. I just dont know what to do anymore, I'm so sick of trawling the internet looking for something to take this away. I'm so sorry this has turned out to be quite a long post, got a abit carried away with typing to people that understand, can feel so alone sometimes! but anyways, hi everyone, its not great that we've all got this crappy thing but its fab to have finally found you all!! xxx

Nic

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Re: so happy to find you guys!!

Post  Sarah001 on Tue Apr 10, 2012 7:23 pm

Hi Nic and welcome. I'm really glad you posted that about David Nunns, I was supposed to be referred to him but it went to pain management instead and I've been mulling over whether to push for an appointment but conversations with my physio about what can he offer me that I can't get closer to home and your post have decided it for me and I'm not travelling hours to see someone who doesn't have anything different on offer, I too thought he'd be good because he's involved in research but seems he's maybe just a bit more interested but not better informed. Anyway, I was wondering if you had alot of physio or if you were given the 6 sessions then out that alot of hospitals have now? It seems a very odd point to stop physio if it started to help a bit! Did the physio look at your posture, gait, alignment as well as focus on your pelvic floor? I'm very interested in the physio side of things as that's what I'm currently pursuing but I have a couple of other complicating conditions that are making it very difficult and long winded! Have a good browse and again welcome.
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Re: so happy to find you guys!!

Post  naomi on Tue Apr 10, 2012 9:23 pm

Hello Nic and welcome to the forum!

Ur condition sounds v similar to mine. Provoked vestibulodynia/vulvodynia, all started from yeast infections, anti's.

I've been round the block regards specialists, I think David nunns was my 8th or 9th. He was useless, I saw him twice and I knew that using vibrators to stretch my vagina wasn't the way forward...tried telling him its pure agony, the skin cracks and bleeds. I gave up on him!

Was meant to have vestibulectomy tomorrow but had it cancelled today as I realised (after more painful prodding) that the sore areas were more than he was going to remove with a partial vestibulectomy. Also a part of me still thinks the doctor crandall yeast theory still gives a good fight for the reason I am where I am!

Glad u found us! I think I would have gone loopy by now without the forum and our Facebook group!
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Re: so happy to find you guys!!

Post  Sebby (Admin) on Fri Apr 20, 2012 8:02 am

Welcome to the forum, I hope you find the support and advice you need here. You said that accupuncture helped. Is there no way you can get this on the nhs? Might be worth digging around to find out if there is a legal loophole where they have to fund it if its the only thing that's helping?

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hello

Post  chanel825 on Wed Apr 25, 2012 7:50 am

Sorry you are suffering but please know you are not alone. My vulvodynia was so bad I could not have intercourse and with the nerve block Marcaine helped me alot. I dont know if you would like to ask your doctor about that. What I still have in no pain with intercourse but a lot of discharge and burning that has not gone away. It is very gross and very uncomfortable. God is great hope u get better

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Re: so happy to find you guys!!

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