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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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 …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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 …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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 …

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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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