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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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

Suffering

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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.

Ukvestibulodynia

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Re: UK based vestibulitis sufferer

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