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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

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: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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