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» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

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

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.

Comments: 1

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 …

Comments: 0

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


New member... so glad to find others like me!!

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New member... so glad to find others like me!!

Post  fairyemma1980 on Sun Jan 08, 2012 5:35 pm

Hi I'm Emma, and I've just found this forum online. I'm 31 and been suffering from vulvodynia for about ten years now, but was only diagnosed about 8 months ago when I went to the doctor having discovered the info online and asked her if that was what I had. Over the years I've seen more specialists than I care to remember - about 5 different GPs, gyno at the hospital, GUM clinic, had keyhole surgery to test for endometriois, counselling, pyschotherapy etc. I now find it far too painful to have sex and to be honest the thought of sex terrifies me; plus I have very little libido left now anyway.
Over the years I've kept trying to get something to help me ease the pain but generally I find that doctors and specialists are either lacking in knowledge or are just not bothered.
When I found out about vulvodynia about a year and a half ago I spent months plucking up the courage to go back to the doctors and demand that they try to help me again. Since then I've gone onto 100mg of amitrypline a day but I don't really know if its helping that much. I've also been referred to a supposed 'vulval specialist' at my local hospital but she has been very negative so far and basically as good as said there's not much she can do. She is part of the dermatology dept. and has booked me in for patch testing in February, but to be honest I don't know whether its worth going. I'm already well aware of how lotions and potions affect me and only ever use acqueous cream to wash down there anyway.
I've also been referred to a physiotherapist in the gynocology dept at my local hospital and she seems to be the only ray of hope at the moment. Have already seen her twice in a month and she is the most positive person I've met in a long while - very patient and understanding. She is trying to train me to do pelvic floor exercises as my vulval pain has caused my pelvis to become very tight, which obviously affects any sexual contact I try to have.
I have been with my husband ever since my vulvodynia began, and we married in summer 2010, although we have not yet had sex as a married couple. I'd like to have a baby this year but I'm scared that a)I can't have sex to conceive and b) Delivery would be too painful. My husband is really understanding about it all but I always feel such a disappointment and worry constantly that he will go off with someone else to get what I cannot give him.
Is there anyone on this forum who has conceived and given birth whilst having vulvodynia? I'd really like to hear from you about the experience.
Thanks.

fairyemma1980

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Age : 37
Location : Sheffield UK

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Re: New member... so glad to find others like me!!

Post  Sarah001 on Tue Jan 10, 2012 8:08 pm

Hi and welcome. I've also done the vulval specialist who's actually a vulval dermatologist route, mine was in charge of medication so it might be worth going back to get her to request your GP gives you something different. I'm also on Ami and it didn't help so I've had 450mg of Lyrica added which helps a bit. I've also just started with a positive physio but I have a very unstable pelvis along with my super tight pelvic floor so I have to start with exercises to stabilise that before we even look at the PF issues. Fingers crossed physio works for us!
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Sarah001

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