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Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
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» Finally found a place for me...
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» UK Vulvodynia Clinics
Sun May 20, 2018 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

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 …

Comments: 0

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 …

Comments: 4

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 …

Comments: 5

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 …

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 …

Comments: 14


Hi Im from Australia :)

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Re: Hi Im from Australia :)

Post  Mouse on Tue Feb 15, 2011 11:16 pm

Hey everyone,

I think PT is the American version, we kiwis have physio.... if we are really lucky!

Stompy, mine has gone the same way with the lovely pelvic floor probe and not even dinner and a movie first!!! Awkward because she watches my face to see when the pain tapers off. Hmmmm. I get REALLY anxious before I go.

I have now aggravated my sciatic nerve which runs from the backside down the leg. This is because I had to adjust the way I sit to accommodate the V and it made my other parts angry. I get physio on both now, I'm not sure which is worse to be honest. I've also found I really tense everything up and it's a process to relax when she says. I think I've relaxed but it's not even half way there.

Louise I'll meet you at the Melbourne clinic =)

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Tue Feb 15, 2011 11:50 pm


Thanks for the book title stompy I will deff look into it!

I do wish we uk girls had such a clinic!!

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Re: Hi Im from Australia :)

Post  noni on Wed Feb 16, 2011 12:03 am

Haha...sorry about the PT ref...<<

Just wondering...what does it mean when they say to ``drop your pelvic floor``??? Anyone know?

How about at home techniques? Or is it a must to see a therapist one on one?

Thx Smile
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Re: Hi Im from Australia :)

Post  jules on Wed Feb 16, 2011 3:01 am

welcome to the new ladies. i'm so busy visiting our Vulvodynia Facebook group page that i don't make it to this forum as often as i used to. i'm glad you all are finding commonalities. here in the US we do call "it" physical therapy. i had no idea what a physio was when i first joined this site. they do the same thing as your people..biofeedback, dilators, fingers...etc. Me not so interested in it anymore..didn't like for my "area" to be messed with. today, i'm just dealing w/ the raw skin feeling and it's bright read...now you have a visual. hmm..maybe it will get better soon...it goes in waves. if you ladies are not on facebook w/ us...please join. it's nice to have friends who "understand" your pain. k...ttyl

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Re: Hi Im from Australia :)

Post  Sarah001 on Wed Feb 16, 2011 8:23 pm

Noni when they say drop the pelvic floor it's the same as when you relax it to pee, takes a bit of getting used to and hard to do it all the time like we're supposed to but practice makes perfect.
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Re: Hi Im from Australia :)

Post  noni on Thu Feb 17, 2011 1:56 am

thx!
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Tue Aug 23, 2011 10:18 am

Hi Emma,

How are you going with the cream you are trying? I have heard of it and would like to get my hands on it, just having a little trouble (got a referral to a specialist that knows nothing about Vulvodynia..not so helpful). Is it worth trying it?

I'm 30 and have had Vulvodynia for about 10 years now! It took a few years before I was diagnosed and then some unsuccessful treatments. I keep getting thrush which means I can't treat the pain I am having until I'm clear. Every time the thrush goes, sure enough it comes back. I found that physio helped the pain, but gave me thrush. So had given up and just dealt with it all for a few more years. Recently I realised I'm not getting any younger!! I got engaged a couple of months ago. I have a lovely man who has been really understanding, even though I know it's very frustrating for him as I have no desire to have sex..it just hurts too much and then I just get depressed! We would like to start a family in the next couple of years so really wanna get rid of this pain!!!! I think I'll try get a referral to angelique's dermatologist, she's like 3 mins from my house!!!!

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Re: Hi Im from Australia :)

Post  Sarah001 on Tue Aug 23, 2011 5:10 pm

Sorry if I'm being a bit dim but how did physio give you thrush??
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Fri Aug 26, 2011 7:46 am

Hi Sarah001,

That's a great question..if only I knew the answer!! It seems after any little bit of exercise or movement down there the thrush flares up again. It may not actually have anything to do with it, it may just have been coincidence?

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Re: Hi Im from Australia :)

Post  emma on Thu Nov 24, 2011 11:47 am

Hey ladies,

Sorry that it has taken me so long to reply. I forgot that i had started this thread and can i just say that although as frustrating as this condition is, i think it has definitely made all of us better people! Im strong and confident and im sure you all have that strength too!

So, I have recently had the surgery. I was fed up with having absolutely minimal or no results from various treatments and i noticed some of you have asked if the cream worked, well as you can guess - it didnt make a difference, only frustrated me more. You know what, I was sick of getting excited over a new revalation that could cure me and it didnt. When i first went to a doctor and mentioned that i had a problem to this day has been about 4 years. Long process, a lot learnt.

So yes i have had a surgery. Could hardly walk/sit/lay/sleep/breath without my body feeling like it was being ripped apart for 3 weeks.

Totally worth it. Ive had great results and the pain in that particular area - gone! i have a bit of pain higher up but it is getting better as i have just started using the dialators to stretch it out.

Im still wary as i havent got a partner (which is good because im no where near 100%) but Im so glad ive had it done.

I have a question to ask you... How do you handle friends - have you told them what you have?, because the only people who know that i have this condition are my family.... so when my friends start talking about sex, i just hate it. What do you do in those situations because i never lie but its something i just feel i have to lie and make stuff up about otherwise conversation gets akward.

Em xo





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Also in Melbourne!

Post  sophiarp on Wed Apr 04, 2018 12:03 pm

Hi everyone,

I know this post is from years ago - but if any of you are still online, I'm also in Melbourne and got diagnosed late last year. I'd love to catch up with others in Melbourne.

Love and painlessness to you all!


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Re: Hi Im from Australia :)

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