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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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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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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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 …

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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 …

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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 …

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Sex in Society

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Sex in Society

Post  [Sara] on Wed Jan 12, 2011 1:59 am

How does it make you ladies feel when the media is so focused on sex? Seems you can't watch a movie anymore without nudity and sex and it makes me really uncomfortable. I don't really find it offensive, it just makes me feel weird if my husband sees it because I wonder where his mind goes. It also just makes me downright depressed about my condition and the fact that my chances of ever having a normal sex life is very slim. I have society telling me that men want sex and think about it all the time, and penetrative sex for that matter. It's thrown around so casually...and makes me feel more "broken" than I already am. I know my hubby is by my side and supportive 100%, but I feel crazy sometimes because my mind wanders where it shouldn't and worries about things that probably don't matter.

Sigh. Stupid vaginas not working properly. Sad

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Re: Sex in Society

Post  noni on Wed Jan 12, 2011 3:15 pm

The world is fucked up.
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Re: Sex in Society

Post  Sebby (Admin) on Wed Jan 12, 2011 9:14 pm


lol noni..I like that, straight to the point!

I to find it hard when people talk about sex and I dont buy womens magazines anymore as all they bloody talk about is sex and shoes! the shoes I can handle lol

It does make me feel depressed and the thought that I haven't much chance of a regular sex life at the moment really worries me. I do try to stay positive and say that at some point some treatment is gonna work.

Its hard though as often the thought that im 30 and single and want a boyfriend and a baby one day scares and upsets me so much.

Those who do not know about my condition have started to ask about baby's etc since i turned 30...only a few days ago! and I dont know what to say! I dont want everyone knowing about the vulvodynia so I just keep up this pretence that im not maternal Sad I can see myself at some point exploding with "well maybe I can't have a baby!' I do think people should think before opening their mouth as many women have various gyne conditions and fertility issues so why dont they think of that!

I am just praying some treatment works well enough for me to be able to have intercourse regularly enough..dont have to be everyday, dont have to be several times a week, even just once a week or a few times a month would do me!

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Re: Sex in Society

Post  Mouse on Wed Jan 12, 2011 9:32 pm

Hey Sarah,

You made me smile. People are just interested in your life - fuck them the nosey bastards! My mother-in-law told me on the phone last night that she can't wait to hear how I get on at my physio today ....ARE YOU SHITTING ME??? I hate to think what my husband has told her but I do know it gets me out of visiting her and that has to be a bonus sunny

I think the answer to the baby question is a clear and to the point "I have a chronic pain condition in my pelvis ... (and if you are brave enough) that prevents me from having sex" if they come back for more after that - then a punch in the face should cover it.

I'm picking that when your hoo-ha is fixed it will be sex every day for a while.

V.

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Re: Sex in Society

Post  Sebby (Admin) on Thu Jan 13, 2011 8:24 pm


LOL a punch in the face..good option! Yeah I often just call what I have chronic pelvic pain..I think I will say it if I do get any stupid comments..

I think the whole fear is I don't want people to pity me I guess..everytime they look at me thinking.. 'oh im glad im not her' and it seems to admit finding sex difficult is like (in this society) admitting im an alien lol. Makes me feel defective and not only not a proper women but not a proper human being.. I know many girls with this feel the same way its just a shame we have to beat ourselves up on top of having a chronic pain condition.

If my hoo-ha does get fixed I will feel sorry for any cute men I come across, they will get harrassed good and proper! lol
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Re: Sex in Society

Post  Mouse on Thu Jan 13, 2011 9:25 pm

Hahahaaa a plural even!!! And a punch in the face fixes most things even if it is imaginery.

People are too busy/lazy to be thinking "poor you". A little gem I came across years ago is what other people think of you is none of your business - hmmm I think that was a self awareness class. Be kind to yourself love and don't be thinking about what other people are thinking about - it's exhausting!


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Re: Sex in Society

Post  naomi on Sun Jan 16, 2011 11:22 pm

yeh I hate the pity thing....unforch I have myself to blame for that as most friends and my family know exactly what is wrong with me...otherwise I get paranoid they think im just a mardy, moody cow!

I only buy the cheapy magazines that have all the weird and wonderful stories... i.e. 'I married my brother without realising'...'the weeklies' they call them in the uk. I cant buy the other mags as they are all sex sex sex.

I love reading and nearly always miss out chunks in books as they get their jiggy on....damn it do pep think about anything else?!!

It does really get me down and I honestly dont know how I keep my head above water. Apart from keeping up with you guys on facebook most days...that seems to perk me up if im feeling real low.

As with the babies thing.... I am so effing scared as to how my life ids going the pan out that the last thing im thinking about is bringing another poor sod into the world!!....scares the life out of me. What Ive been thinking about a lot recently is the idea of adoption. There are so many poor little souls out there who have it so bad, id love to care for a child (ren) as much as i could. I know folk say "ohhh but it wouldnt be ur own flesh and blood" but that really doesnt bother me. It sounds silly to say but if I can look a little fluffy bunny rabbit as much as i do...im pretty sure I could love a child as much Smile

I just want to feel happy again. Truely happy, even if i know i will have to put up with this condition (which the specialists tell me I most probably will). Now thats gona be the hard bit. I cant remember the last time I felt happy/contentment.
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Re: Sex in Society

Post  noni on Mon Jan 17, 2011 9:34 pm

Naomi im sorry that you cant remember the last time you were happy or content. I guess that would apply to many of us, i dunno.

All I can say is... lifes a bitch, indeed.
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Re: Sex in Society

Post  Sebby (Admin) on Mon Jan 17, 2011 10:33 pm


I can so relate to that Naomi..I really can't remember a day over the last couple of years that I have felt content in life.

As for adoption..I dont think anyone would legally sign a child over to me! Maybe they would loan me one for the weekend? lol Think my mental health background would go way against me. I mean I know it was a good few years ago now but in my youth I was self harming and was admitted to hospital :/ Depression was out of control at the time.

Im quite glad at least that time is behind me but it never stops me thiking about possible relapse..that has to be my greatest fear

In the meantime, I learn to manage it and live with it. No its not fair we are suffering and cant find our happiness when all we long for is a button to restore mental and physical health.

I will continue to pray for this for all of us..in the meantime we have each other Smile cheers
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Re: Sex in Society

Post  naomi on Mon Jan 17, 2011 11:09 pm

def! Its having faith as well...im not religious so am going to a buddist/spirtual churchy place in cheltenham on saturday...its an open day so thought id check it out. Need to calm this difficult and unruly mind of mine!!

we could share a baby between us Sebby! pass the buck when we are feeling rubbish Smile

got that book 'Vulvodynia Heros' in the post today, dont know if its any good but its a bit of bed time ready for me....instead of mills and boon stupid sex stuff.....urghhhhh who'd have sex....dirty filthy stuff! so last year (well 2 years in my case) Smile If u want to read the book after me i'll post it to you...it could do the rounds xx
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Re: Sex in Society

Post  Sebby (Admin) on Tue Jan 18, 2011 10:29 pm


Def let me know what the book is like! Oh and that sharing a baby thing sounds like a great idea! lol

Sometimes my faith (christian) is the only thing that keeps me going. I can be a rock bottom but I hang on, sometimes so barely that I think I may die from how im feeling! but I pray and pray and Im lifted out...so I continue to pray...

xx
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Re: Sex in Society

Post  noni on Wed Jan 19, 2011 4:38 am

Dont worry, we all have angels looking out for us. In my early years I had a spiritual encounter with an other wordly being...really. And in my hard times I reflect on that day, and I think the spirit revealed itself to me for a reason.

We are suffering for a reason....to learn and grow from this. To help eachother. To become stronger and to become closer to the source (god, the creator, whatever u wanna call it).

I`m not trying to be hokey or a bible thumper...but I really believe we are meant to learn from our hardships, and ultimately help eachother out.

Peace out.
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Re: Sex in Society

Post  nadja on Wed Jan 19, 2011 4:33 pm

Ohhhh Wow Noni tell me more about you're encounter with a spirit? I am REALLY into all of that and have been even before I got this....
I also believe that a positive has to come out of this... I had some sharman work done on me again yesterday as I was really bad and it's all to do with moving the energy and dealing with my demon (which everyone has) and I really need to change my job I am not happy with it - I feel so bored and fed up.
My Mum has been reading 2012 book and it mentions in there about assemblage points:-
http://www.assemblagepointassociation.com/register.html

I have booked myself in with Tom the guy that does it in Devon it costs 110 pounds but will give it a try Smile


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Re: Sex in Society

Post  Sebby (Admin) on Wed Jan 19, 2011 8:26 pm


I do feel that noni that essentially the hardships get us closer to God and ultimatly closer to the plan he or she! has for us.

I have deff become closer over the last year. I pray more and read my bible more even if its just to dip into it to read a few uplifting verses.

Hmmm I do happen to be woundering what my plan is though!

Lets hope ours is to ultimatly find the cure for this conditon!!

Lets keep researching, bugging drs and sharing information. Together we are stronger xx sunny
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Re: Sex in Society

Post  noni on Wed Jan 19, 2011 8:44 pm

Hey Nadja just be weary of psychics and all those other guys, I have been suckered a couple of times....geeeez all that money I could have spent on hamburgers..mmmmm.

They all told me I have a lot of neg energy around me and that I need to be cleansed for an additional five hundred bucks...hahahaha....im not super bright, but not that stupid either.

Sebby, you`re right on track girl, look at this website, you are saving us from going INSANE you are an angel in human form

Take care.
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Re: Sex in Society

Post  Sebby (Admin) on Wed Jan 19, 2011 8:56 pm


Thank you noni..im so touched I love you

I couldnt do it without all the wonderful input from you guys.

That you have chosen to trust and share on this forum is so special to me

Godbless you all xx Smile
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Re: Sex in Society

Post  nadja on Thu Jan 20, 2011 8:25 am

Noni did none of it work for you then?
You didn't mention about you're spiritual experience please do tell?
Also question do any ladies experience pains around the groin area front and back that in turn effects the legs as I have pain all around there too currently its not good Sad

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Re: Sex in Society

Post  Sebby (Admin) on Thu Jan 20, 2011 8:50 pm


I got terrible muscle pain in my right leg a week ago and was even limping..I still dont know how this happened!

Then after that goes I now have terrible muscle pain all over my back..but funny enough mainly on my right side!

I think its the way I sit as having a painful vulva makes you sit funny :/

I also think as well as my pelvic floor my whole back and pelvis area is tight and goes into spasm, I really do need the physiotherapist!

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Re: Sex in Society

Post  noni on Fri Jan 21, 2011 1:57 am

Yeah, in terms of the spiritual thing:

I saw an appirition when I was 13, right around my most rebelious time... drugs, skipping school...I was not high at the time though rest assured. But it had a profound impact on me, I turned my life around after that, as I recall. It was kinda a while ago but, yeah, gives me strength.

As for the psychics, they just prey on people. Really fucked up, but that has been my experience. I need to manage my money better, really, haha.

Nadja, I also get strange rectal sensations...embarassing....yeah stinging and burning...I dunno, it sucks.

I just need to mellow out, I have been researching homeopathic methods for this monster of a condition or whatever you wanna call it...I will be trying sea buckthorn oil...for my inflamed bits, shall I say.

But shit I cant stay away from junk food. I need to taper off with binging (is taht how you spell it?) at midnight to deal with stress.
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Re: Sex in Society

Post  Sebby (Admin) on Sat Jan 22, 2011 11:37 pm


I totally binge on milk, chocolate and bread...all the bad 'yeast' things!!

Im gonna try to change that asap..dunno what Im gonna eat tho!! Rolling Eyes
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Re: Sex in Society

Post  nadja on Tue Feb 01, 2011 5:02 pm

Well ladies I went and had my assemblage point recentred on Saturday in Devon and it was good I feel a lot better from it and not sooooo down Smile it was out of place so they used the coloured lights and gemstones on me which was good. You should try it google Tom Blaen

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Re: Sex in Society

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