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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


UK based vestibulitis sufferer

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UK based vestibulitis sufferer

Post  MysteryMe on Sat Aug 13, 2011 12:31 am

I am 26. I was diagnosed with vestibulitis yesterday; until then I had never heard of it. Once it was explained to me it made perfect sense, though until that point I merely thought I had vaginismus. Now I understand that I suffer from both conditions, though obviously I am in the very early stages of diagnosis and I don't really know what will happen next so I am trying to find as much information and support as I can.

To give you a few details I have had this condition all my life, it only affects me when someone or something tries to penetrate me - when that happens I experience searing pain. I have had some sexual contact though sexual relations have always been painful and often distressing.

Psychologically I think I have blocked a lot out and it is going to take an awful lot to come to terms with this - especially as I don't feel I can talk to family or friends. I guess this is a common theme? My doctor has told me that I will receive psychosexual counselling which I am pleased about, though I know from my experiences with "regular counselling" that I am a tough nut to crack and once an idea is entrenched in my head it will be hard to shift it. On that basis I am considering hypnosis. Have any of you had experience of this?

I feel like a complete idiot as I know virtually nothing about a condition that has plagued my adult relationships. I am just so thankful that I have the NHS, for one thing, and that I have found a place where others have had similar experiences.

MysteryMe

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Re: UK based vestibulitis sufferer

Post  Sebby (Admin) on Mon Aug 15, 2011 12:27 pm

Hi and welcome to the forum

I too have had vaginismus & vulvodynia for as long as I can remember.

It has always effected my sex life and the ability to be examined and use tampons. The pain got more constant for me a few years back (dont panic this does not mean this will happen to you) and this was when I sought treatment. I just thought that prior to this I was just anxious.

I am now doing pelvic floor biofeedback when I can (its been a bit difficult lately) and am on Pregabalin 400mg

Things are up and down but I am getting periods of less and low pain so am thankful for that. I am also able to have a sex life again which is something I thought I couldnt do over the last few years.

Keep strong and read up as much as you can about the condition. This will help you decide which course of treatments you would like to explore and what you think could be a cause of your condition

As you have had vaginismus and pain on penetration for most of your life then I would suggest looking into the Pelvic Floor theory, I got my info from Dr Glazer's site www.vulvodynia.com - you can also ask to be refered to a womens physio or look for one yourself (make sure they have worked with this condition before if you can) Do not dismiss other theories though as a holistic approach is beneficial

Also you are not an idiot, I had no idea what was going on for years and this is what happens to many women. Many of us found that GP's knew nothing about it and many had not even heard of vulvodynia! There is not enough education and awareness even within the medical community. Lets hope this changes soon!!

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Re: UK based vestibulitis sufferer

Post  Aussie on Tue Aug 16, 2011 1:34 am

I have had hypnosis for depression. Cured it Smile

I also went back when V started, did not help with pain but stopped the anxiety associated with it.

As sebby said, biofeedback! for sexual pain it is the best thing ever. I have 24/7 pain and also sex pain but with biofeedback and physio the sex pain is way way better. I can even orgasm now! The problem is wanting sex, when I am in pain there so start with.

Hope this helps

Claire

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Re: UK based vestibulitis sufferer

Post  MysteryMe on Tue Aug 16, 2011 7:33 pm

Thanks to both of you for the replies - it is so good to speak to someone who understands...I cannot even think about talking to a friend about it.

I have heard lots of people talk about biofeedback but I don't really know what it is. I'll do some research, thank you. My doctor told me "You can get help with this and we can make things better for you", which sounded amazing at the time. By reading your posts I am getting a much more realistic view of what to expect.

My sexual desire has never been a problem, which in a way makes my failure in sexual relationships even more frustrating. My boyfriend has been amazingly patient but I think really he has written off ever having amazing sex, or even satisfying sex, with me which is really upsetting and is at the root of a lot of unhappiness that I can't even begin to go into with him. I would love to change so that sex can be a major and successful part of our relationship. I'm terrified of losing him. Hearing that you can now orgasm has made me realise that I won't necessarily not do so myself. Thank you.

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Re: UK based vestibulitis sufferer

Post  Aussie on Wed Aug 17, 2011 12:00 am

Yeah if my daily pain level is low (ie 2/10) I can usually get past it and get in the mood, If my clit isn't sore that day than thats how I orgasm. If I orgasm prior to sex it loosens everything else up and I am able to really enjoy it. But if my clits sore it doesn't work as well cos I can't orgasm first and I get the burning afterwards. Seem to be doing ok maybe twice a week. Hes good about it though If I am having a bad few weeks it's a no go. I always know how I am going to be based on the daily pain.

You will get there! xx

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UK based vestibulitis help

Post  Suffering on Thu Oct 06, 2011 9:36 am

Hi,

I was hoping someone could recommend a doctor who knows about vestibulitis. I am convinced that is what i have, all my symptoms match, sex is very painful, always has been, i suffer from Vaginismus also but i believe that the tightness in my muscles is a secondary problem cause by the initial pain.

I have seen a couple of doctors who are all pretty clueless, i tried raising this with them but they have never heard of Vestibulitis and the only treatment they will offer me is counseling.

It is driving me mad trying to find someone who will listen and actually offer me practical help. If anyone knows a specialist doctor in the UK that i can approach please let me know.

I am based in Bristol but willing to travel if i need to.

Thanks! x

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Also uk vestibulitis but with cuts and sores also

Post  Ukvestibulodynia on Thu Oct 13, 2011 5:02 pm

Hi I am also in my twenties (22 next month)and a newly diagnosed vestibulodynia sufferer and wondered what symptoms you get. Is it just pain? As I stated in a recent post I also get cuts and grazes after having sex but the dermatologist said this was not the cause if my pain and it was nerve related. Do u get and visible signs or just feel the pain and can't pysically see any reason for it.

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Re: UK based vestibulitis sufferer

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