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» I don't know what to do anymore
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...
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


New to forum and despairing with vulva pain

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New to forum and despairing with vulva pain

Post  Sap22 on Tue Dec 06, 2016 9:37 am

I am in feeling very down and in despair. I just can't see any light at the end of the tunnel. After months of bladder problems in August 2015 I got better then was diagnosed with Vaginal Atrophy in May 2016, which was improved by systemic HRT and vagifem. When I went to see my menopause specialist for follow up this September she diagnosed Lichen planus and told me to use steroid cream and vaseline. I didn't believe her (gut feeling!) and went to see another sexual health consultant in London who did an internal and gave me a good report regards the vaginal health (PH, no inflammation, VA or lichen planus etc). However, that caused a lot of delayed pain but improved after 10 days. Both she and the menopause specialist decided I should see a vulva dermatologist to definitely rule of LP as they disagreed. I saw her three weeks ago and although she can categorically say I do not have LP and is glad I didn't use the steroid cream, ever since she did the Q tip test I have had vulval pain/tenderness and it's getting me down so much. She diagnosed vulvodynia and secondary vaginismus. I can't use the vagifem I am supposed to use, as it makes it worse and this is worrying me because I don't want the atrophy coming back. Haven't used it for 14 days now. Last night I tried to gently put on a little barrier emollient to protect the area but I woke up in agonising burning pain at 2am. I am also having breakthrough bleeding (possibly from increased oestrogen) and will soon have an ultrasound, but I know I won't tolerate the transvaginal ultrasound, as I have significant touch tenderness now.

I just don't understand how the vulvodynia can worsen when I have used HRT and moisturisers recommended to treat the vaginal atrophy, and improved the situation enormously, but now am left with what I am told is neuropathic pain and cannot continue with local HRT treatment, or get on with life - just the simplest things like sitting is uncomfortable or wearing clothes down there is difficult. I am aware of it all the time and had to give up my job. I am just so depressed about it, as I can't get on with life. I started acupuncture (2 treatments) which I think helped with the prickly pain I was having, and am due to go this thursday but the touch tenderness is really bad.
I wondered if anyone else can identify with this and how they moved forward. Is it a question of time and not touching it. How can I move forward. Thank you for reading and sorry it's such a depressing post... xx

Sap22

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Re: New to forum and despairing with vulva pain

Post  PainBlogger on Tue Dec 06, 2016 4:33 pm

Have any drugs such as amitriptyline, pregabalin or duloxetine been mentioned to you? i.e. drugs used for nerve pain. These can be really helpful to some people. I'm doing really well on duloxetine. The cause of my pain is different to yours (http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement) but nerve pain is nerve pain, whatever the root cause.

Acupuncture can be good too. If you've had some success with that then I'd definitely suggest continuing with it.

I hope you soon feel more positive. This is a horrible condition, but it doesn't have to be forever.

PainBlogger

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Re: New to forum and despairing with vulva pain

Post  Sap22 on Tue Dec 06, 2016 6:35 pm

PainBlogger wrote:Have any drugs such as amitriptyline, pregabalin or duloxetine been mentioned to you? i.e. drugs used for nerve pain. These can be really helpful to some people. I'm doing really well on duloxetine. The cause of my pain is different to yours (http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement) but nerve pain is nerve pain, whatever the root cause.  

Acupuncture can be good too. If you've had some success with that then I'd definitely suggest continuing with it.

I hope you soon feel more positive. This is a horrible condition, but it doesn't have to be forever.

Hi and thanks for your response. I have the option of nortryptaline, as tried amitrityline but didn't like the side effects. Fortunately the burning pain has subsided but it's really hard to accept this condition and I will look up the duloxetine, so thank you x

Sap22

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Re: New to forum and despairing with vulva pain

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