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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


How do you live with this?

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How do you live with this?

Post  Persevere1990 on Wed Feb 22, 2017 12:15 am

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush over Christmas.

I am really struggling to cope with this condition so far and get very anxious when I'm at work or out the house about it. I'm panicking that I'm never going to have a day without pain ever again.

Does anyone have any similar experience or advice to share?

Thank you
Xxx

Persevere1990

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hang in there

Post  amf329 on Wed Mar 08, 2017 10:36 pm

Hi there,

I just wanted to reach out to say that I'm sending you hope and healing vibes.

I've been dealing with this issue - though I've chosen not to label it V because I know it's not just that, and claiming that it is just labels me as 'sick' - for over a year and a half now BUT I am SO much better than I was when it first started. And that was pretty horrific so I have a lot of empathy for where you are right now. Just take it one day at a time, ok?

While I'm not 100% healed, I'm very close - and I have tried a lot of things to get well... and am still figuring out this last piece of the puzzle... But I have had weeks of no pain at all so I know I can get there. And I know you can too.

My first suggestion is to decide you will get well. The second is to use what you need to by way of prescriptions/medications/etc. to get through this part. While I'm not a huge proponent of drugs because they don't heal but they CAN help when the pain is bad. And my third is to search this forum for success stories and stories of healing and hope, as that will help ease your mind.

We're all different and we'll all healing on some level though it may be by different methods so stay open to what may work for you...

hugs,
A

amf329

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Thank you!

Post  Persevere1990 on Thu Mar 09, 2017 8:43 pm

Thank you for the reply A, it makes such a difference being able to talk to someone who really understands.

Over the last two weeks I have started taking 30mg Nortryptiline every night and it dramatically decreased my pain levels. Over the last 5 days I have been mostly pain free with just a few hours of pain on one or two days. I am hoping the pain can be reduced further by staying on the medicine. I have been to have accupuncture too, twice now and hope this is also contributing to the results.

Can I ask what has worked well for you in terms of treating the pain?

Persevere1990

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Things to try

Post  ellenb on Tue Mar 28, 2017 1:30 am

I know this may sound silly but it has helped me some. Get a squirt bottle and rinse after you pee. This helps if residue from your urine is causing the pain. I've been taking gabapentin, seeing a physical therapist. Steriod cremes and lidocaine have not helped me but everyone is different. I feel your pain!! Good luck

ellenb

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Re: How do you live with this?

Post  Madsmum on Wed Mar 29, 2017 5:27 pm

Hello
My 12 year old daughter has vulvodynia and has had it for about 4 months. It was awful not knowing what was wrong with her but knowing has made it a bit easier to try to deal with after lots of misdiagnosis that made her pain worse. She has missed nearly the whole term of school but has managed 10 days since half term and she has caught up with her work. She is seeing a vulva specialist who prescribed instillagel which is a lighter form of lidocaine. Lidocaine ust stung her but the gel doesn't hurt and can be used as often as every 30 mins. The specialists says to use it at least 4 times a day or when you need to and it can be used with other creams like emuaid. We tried emuaid but we are not sure it worked. I got her a bony parts cushion which she says helps in the car and on soft furniture but not on hard seats so I have ordered a Bonmedico orthopaedic surgical ring donut pillow for her to use at school as the hard seats take their tole the next day and it takes the pressure of according to people with piles and some vulvodynia sufferers use memory foam donuts so I thought I would try something more orthopedic.Vagikool was recommended by the specialist it's a gel ice pack that you freeze put in a sleeve and put it in your underwear and this is the only thing that really seems to help my daughter straight away. So I bought 4 of them

Madsmum

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Re: How do you live with this?

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