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Today at 12:00 am by Bx11

» 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

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 …

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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.

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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 …

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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



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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.

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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 …

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been prescribed pregabalin....

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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Tue Mar 08, 2011 10:05 pm


Yes your right Sarah I thought of that today. Im not gonna come off the pregabalin unless I really does nothing. I will see in a month or so. I have had a good week and half with pain. Well good means the pain is medium not high.

But ive come off my period so cue flare up! at least I know thats a certain trigger. I tried the boots cotton pads, I think next period I will be brave and try tampons when Im not so heavy. The pads rub and so my vuvar is very upset today. I mean imagine if we went around rubbing a cloth all over our face 24/7 for a week! Im sure the skin on our face would be irritated to say the least!

Its so good for my anxiety that despite dizzynes Im loate to stop taking it. Oh dear I told you im a bit of a prescription drug addict lol On the plus side Im soon to be off citalopram in a months time. Im nervous bout side effects but to be honest ive been fine the other times Ive cut down so im crossing my fingers.


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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 1:42 pm

I suppse there's still time yet for both of us to have results, if we can just get past the dizziness and out of it sensation maybe a higher dose will help us. I use cotton pads but they still rub don't they? I mean it doesn't matter if they're cotton or not the mechanical rubbing problem is still there. I don't really have many heavy enough days to warrant tampons most of the time, 2 days of noticeable bleeding is the most I get then spotting for the rest so tampons just wouldn't be helpful for the light days. Damn periods, bring on the menopause!

I've had a change of heart about relaxing my pelvic floor first and decided I'd reached a plateau doing that and couldn't get any further because more relaxation set off my SI joints so I've joined you on the Glazer Protocol Sebby, started on Saturday so done it for a few days now. Let's see how we are in a couple of months time!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 7:00 pm


Woop woop! good to have a Glazer buddy lol!

Do you keep a pain diary? A good idea to monitor your progress. Im doing the online one that I posted about Smile it does graphs and reports so you can see how you are doing over a certain time period!

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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 8:13 pm

I hadn't even thought about a pain diary, I'm a bit all or nothing though and would either not put anything in it or put loads of irrelevant crap in it!! I've written on the calendar "started Glazer protcol" though so I know exactly when I started it. I'm also remembering to do 2 sessions a day this time instead of being hit and miss and giving up after a couple of weeks. So far my pelvic floor has only got tight during activities where it usually does, stress etc. I've also noticed when I'm doing something where my abs should be stabilising me I'm actually gripping the pelvic floor instead so I'm trying to stop that. God I hope the Glazer protocol works, I'm going to be so disappointed if it doesn't!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 9:47 pm


Yep I hope it works too! My pelvic floor is still acting drunk! or unstable as Glazer would put it but im getting there.

I am due to email him on Saturday with my two week update so will post what he says on here.

Thing is with this protocol is its very all or nothing its months or intense work before seeing results..

I had a flare up after coming off my period yesterday and today im so much better! a one day flare up! this doesnt happen! Smile Im still doing the vaseline and water thing..helps so much

Ugh I have to do my biofeedback before bed...grrrrrr oh well lol


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Re: been prescribed pregabalin....

Post  Sarah001 on Fri Mar 11, 2011 8:19 pm

I was thinking about the amount of dedication today, I bet his research gets hampered by lots of women dropping out of the program because of the 2 sessions a day for months thing. I'm determined to keep it up and I'm one week in and haven't missed a single session yet. I'm totally determined to keep going this time, sometimes I do a session before I even get out of bed. I'm pleased it hasn't resulted in a tighter pelvic floor so far, I think the sessions of biofeedback I had were invaluable in that respect because I just wasn't relaxing the pelvic floor at all. I'm now managing not to let the work I do twice a day make things worse. I am however finding it difficult to stop holding my breath while I'm doing the pelvic floor work which obviously isn't what I'm supposed to be doing!! Rolling Eyes Can't wait to see what he says on Saturday.
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Sat Mar 12, 2011 5:49 pm


I too haven't missed a single session in two weeks! am so proud of myself lol I do it just before I get up to get ready for work and before bed.

I am writing a list of things to ask Dr Glazer before I email himl lol

He did say that at leat a quater of the women drop out of the treatment after a month or so. Also the holding your breath thing. He said not to even worry about that. When I contract I can't help but hold my breath and then can breath during the relaxation part. Dont focus on the breath just holding the contraction. You need to feel a sucking up of the sensor rather than just a squeezing..as if you are trying to suck it inside of you!

Do you have the machine that lets you see how stable your pelvic floor is? with the lights? The aim is to get to the letter J on my machine and hold it for 10 seconds. As my pelvic floor is unstable it goes up and down (mostly down as im weak also)

He said it takes a lot of practise to get the nack of holding it

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Re: been prescribed pregabalin....

Post  Sarah001 on Sat Mar 12, 2011 9:43 pm

I don't have a machine I'm afraid, I'm having to just do without, need all my pennies for my imminent move! I have got a simple plastic pelvic floor educator thing though that moves if you do it right and shakes if you're struggling to hold the contraction so that's an option. Are you feeling like you're using a light contraction getting to J or a strong one?

I'm surprised he isn't fussed about the breathing, my physio is very strict about that as the pelvic floor and diaphragm should work together but it might be because I have to learn how to use mine functionally again from scratch to stabilise my pelvis. I'm a habitual breath holder in daily life too and it makes me clench my pelvic floor when I do it so maybe that's why I've been told not to do it! Rolling Eyes I'm making myself breathe at the same time as a contraction so it doesn't get to be a habit, holding my breath every time I need to use the pelvic floor that is. Leon Chaitow actually gives faulty breathing as a possible cause of pelvic floor dysfunction because of the PF/diaphragm connection. I found a really interesting article about it a while ago but can't find it now. He's got a specialist interest in faulty breathing and has branched out into the PF because of the connection. If you can find it it explains it better than I have.

Let us know how your Glazer chat goes! Wink And I'd love to hear how much of a contraction you feel you're using as that advice varies from therapist to therapist too. I did poke my muscles tonight just inside the vaginal opening and they are still seriously sore if pressed so I may have to give them a bit of an eye watering massage a few times a week too.
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Re: been prescribed pregabalin....

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