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Mon May 21, 2018 4:08 am by mtsp

» 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.

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


Vulvodynia diagnosis...now what?

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Vulvodynia diagnosis...now what?

Post  Lancslady on Wed Jul 04, 2012 6:13 pm

Hi there all!

I am a newbie here as I have just been diagnosed with Vulvodynia. It has been a long journey, and involved some experiences with consultants who are less than helpful.

Initially I was relieved to finally see a consultant who seemed to believe what I was telling her and actually had a 'name' for what I have been suffering. But now I am in the minefield of information and am not sure what to do or where to turn first. I have been prescribed a low dose of Amitriptyline but I am nervous about taking this due to the side affects, what experiences have any of you had with this? I would appreciate any feedback?

I suffer from pain on touch and therefore intercourse. I have been with my partner for 10 years, and we got married this year, which is fab, but our sex life is suffering due to this condition. I am lucky, he is very helpful and understanding but I just want a normal sex life. I have suffered with this for about 5 years, but it has got increasingly worse in the last 2 years - and it is very draining. I suffer from intense burning and aching after intercourse and at times have an unexplained pelvic ache teamed with stabbing pains at other times - not a result of intercourse.

Do any of you have suggestions for help? I have read about the gels that numb the area etc, how useful is this? We are going on our honeymoon next month and I was really hoping to be able to try and have some form of a normal sex life Smile

Please share you advice with me, I would truly appreciate it! Very Happy

Lancslady

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Age : 37

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Re: Vulvodynia diagnosis...now what?

Post  April lily on Wed Jul 04, 2012 8:33 pm

Hi my name is April

I am also fairly new to this forum too but it has been a great help i have gained some really good help, advise and support from it. It just a nice feeling to know that you are not alone feeling this way and can chat and relate to people, it has been very good for me and i really hope it helps you too Smile

I am very similar to you in the symptoms that you have shared.
When i first got diagnosed they started me off on a low dose of Amitriptaline too, i am now taking 75mg. My side affects are very mild i just feel a bit more drowsey at times but it is nothing major. It has controled most of my inner pain whilst having intercorse, it still hurts at times but it has helped the over all pain alot.

I tried the lidocaine 5% gel, i got it prescribed by my Dr. as i have pain out side to even the slightest touch is painful especially around my clitoris area it is awful. It seemed to work for the first few times of using it it really did make a difference, i just appyed it 30 mins before i had intercorse (which isn't very romantic unfortunately it had to be planned! but needs must) So may be give that a try it may work for you and help you.
Although for some reason after a few times of using it it started not to agree with me it felt burning and saw and itchy so i told my Dr. and she gave me a lower percentage i am now using its called Vagisil it has 2% of lidocaine in it, which i find excellent as it helps with soreness and itching after sex too.

Also i use Yes lubricant which i find really good and effective as when i used other lubricants from supermarkets they made me sore and itchy afterwards which wasn't nice.
I buy the disposable applicators which are really handy because it sends the lubricant inside the vagina instead of just around it which i find helps the pain also.
The Yes lubricants are for patients with Vulvodynia it says why it is good for patients etc. on the website we are advised to use the 'water based lubricants' that's what i have and i have had no problem with them i think they are fab!

I hope this has been helpful too you and hopefully some of the products that have helped me will work for you too.

Take Care x

April lily

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Re: Vulvodynia diagnosis...now what?

Post  April lily on Wed Jul 04, 2012 8:34 pm

PS. Here is the link to the Yes lubricant website if you want to have a look Smile http://www.yesyesyes.org

April lily

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Thanks

Post  Lancslady on Wed Jul 04, 2012 10:30 pm

Hi April

Thank you so much for you reply and the advice you have given me, it is, as you say, comforting to have a place to discuss this horrid condition and know that people understand.

I am certainly going to try the lidocaine gel and the 'yes' lubricant, it seems a good place to start. I still have concerns about the Amitriptaline, but then I suppose I really can't cope with it much longer so maybe I should try anything available.
I really appreciate your help and ideas, having found this forum from the advise of the consultant I now have lots of reading to do to understand how to try and control things, but just knowing that I am not abnormal and not alone in this counts for so much.

Will keep you informed of progress. Very Happy

x

Lancslady

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Amitriptaline

Post  blessed on Wed Jul 04, 2012 11:36 pm

Hi there.. after 6 months of unanswered questions and extreme torment, i was diagnosed last week with vulvodynia. the doc said there is no cure, no hope..but he gave me Amitriptaline to try and get some relief. so far its been 4 days and though i have to give it some time to work, its doing a number on the rest of my body. i have terrible headaches, nightmares and i feel drowsy and dizzy during the day though i take it at night...i hope after a while these effects would wear off and the pain would subside.. but time will tell..

blessed

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Right there with ya!

Post  jmcmil on Sat Jul 07, 2012 4:00 am

Hey, I take Amitryptaline and it does have some side effects, particularly drowsiness. Give it a few days to get into your system and the side effects should go away. Good luck and we are here to support you!

Jackie

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Re: Vulvodynia diagnosis...now what?

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