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

» Vestibulectomy recovery question!
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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 here and trying to find more girls that live in Brisbane or Australia

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New here and trying to find more girls that live in Brisbane or Australia

Post  keepdreaming on Mon Apr 01, 2013 6:05 am

Hi All,

I am new here and I would really like to get in contact with people from Brisbane, Australia.

I was recently diagnosis (2 months ago) with Provoked Vestibulodynia (Vulvar Vestibulitis) and reactive vaginismus due to the Vestibulodynia, after such a long time of massive pain, suffering and feeling completely hopeless.

I just want to start by saying that this forum have helped me SO much!...

My story is very similar to most of the stories in this forum. I met the man of my life, after being in a terrible marriage of 6 years, were "sarcastically" I never ever experienced any symptoms. A couple of months after meeting my actual fiancé Very Happy (He proposed to me a month ago), the nightmare began, I realised that only after a day of having intercourse, I would start feeling this sort of urethral burning, and the need of urinate every five seconds, with a lot of pain for two days and then an incredible massive raw feeling in my vagina opening with stabbing pains. Literally I feel that my whole vulvar area is a massive bruise that's been constantly kicked (sorry! This is the only way I can describe it). After going to a lot of doctors and specialists, asking for swabs, urine tests, paps...more than ten thousand times (that of course came back negative), getting the usual “you have a bacterial vaginosis” “You have a yeast infection, sometimes they don't show up in tests, take this pill, use this cream”, I went back home one day feeling so desperate, alone, disappointed and scared; I started a huge online research with all my symptoms and etc. This is how I got to this forum and I am so thankful about it, because I discover that there was a condition called “Vulvodynia” and it was extremely similar to all what was happening to me. Of course I started trying every single thing I read that would help to alleviate some of my symptoms; 100% cotton underwear, low oxalates diet, coconut oil, calcium citrate tablets, vitamin E oil, and the list goes on and on and on. (nothing really changed). I have to add that by this stage I was a mess so depress and scared, my fiancé always extremely supportive, our sexual intercourse was reduce to times 0.

I finally got in contact with a Vulvar pain specialist in my area which diagnosed me with Provoked Vestibulodynia (Vulvar Vestibulitis), gave me lidocaine 4%, Amitriptiline, and referred me to a Physiotherapist. This also happened two days before leaving for a two months holidays, so it was a bit tricky to start a complete treatment as soon as possible, with my desperation I got in contact with a Vulvar specialist and physiotherapist in the country I was going to be away on holidays and went to see them the very first week I arrived. I trusted this physio when she said that “6 physio sessions” were going to be enough. I can say that physio traumatised me even more, I can't even explain how I felt each time I got out of that physio room, it was so painful and I also feel that what she was doing was very "advance", in session #3 she fully introduced me a thick dilator, even though I said to her: I don't think I am ready for this", she answered back "It is only in your head" and pushed it all the way in Crying or Very sad (maybe this is only me, but it has really make me feel even more depress).

Ok, sorry for such a long story, the thing is that today I can say that the lidocaine 4%, plus the amitriptiline have helped tons. I can't say the same thing about physio, I think I had a terrible experience with the first one I saw, now that I am back in Australia I found one of the best and will let you girls know what happens. Since I started the treatment I have had sex once, and my symptoms only lasted for 2 days, this should definitely mean something positive, right?

I feel the need to get in contact with more girls in Brisbane, I think it is extremely important to talk about what's happening with people that is experiencing the same thing, sometimes I feel so alone and I don't know who to talk with about this, is not easy.

I know that I will need to see a psychologist soon; I am not the same person I used to be. I am incredible anxious and always “waiting for the pain to come back”, sometimes I cry nonstop and of course it had affected my relationship, even though my fiancé keeps telling me that he will always love me no matter what and that we are together in this.

It's been very tough,

Thank so much for reading...

keepdreaming

Posts : 18
Join date : 2013-04-01
Age : 36
Location : Brisbane

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Re: New here and trying to find more girls that live in Brisbane or Australia

Post  keepdreaming on Wed Apr 17, 2013 3:47 am

I need some support pls, anybody interested in getting in contact with me? I feel so alone in this...

keepdreaming

Posts : 18
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Age : 36
Location : Brisbane

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I'm here for you

Post  zarli on Mon Aug 26, 2013 10:35 pm

If you still read this forum I'd love to talk to about 'V'. Im from Melbourne.

zarli

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Re: New here and trying to find more girls that live in Brisbane or Australia

Post  soleil on Sat Nov 02, 2013 5:02 am

Hi

I just saw your post are you still using this forum?
I am from Brisbane and would love to have some help and advice about "V"

soleil

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brisbane meetup

Post  briz on Mon Jul 14, 2014 3:13 pm

Hi, I have a similar diagnosis of provoked vulvodynia. It is horrible isn't it?!!!

I am in Brisbane and have been considering organising a meet up for those interested in speaking to others in a similar situation. So far since joining I have not been very active on this forum but I have read so many things that have helped over the past year and a bit since I was diagnosed (my symptoms started around 2.5 years ago). Hope you are feeling some relief since writing this in April. If you are interested in this idea I have please let me know :-)

briz

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Re: New here and trying to find more girls that live in Brisbane or Australia

Post  sailor_moon on Mon Jul 14, 2014 9:59 pm

Hi there,

Im not from Brissy, but I am an Aussie girl from New South Wales. My symptoms are different to yours (my story is in the help and support section) but I feel your pain.....it is such an emotional rollercoaster.

Id be more than happy to chat. Im looking for more aussie girls on here too. Xo
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sailor_moon

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Re: New here and trying to find more girls that live in Brisbane or Australia

Post  Guest on Mon Oct 06, 2014 5:00 pm

Hi I'm Des, I currently live on the South Coast of NSW, but we have just bought a house on the coast near Bundaberg in Queensland, which we will be moving to at the end of the month.
My problems started after taking antibiotics for a vaginal problem 35 years ago! Which probably gives me the dubious honour of being one of the ones that has had it the longest here in Australia. However I only got a conclusive diagnosis of Vulvodynia & Interstitial Cystitis late last year!
I also am an administrator of a Facebook group called "The Vulvodynia Support Group".

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Re: New here and trying to find more girls that live in Brisbane or Australia

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