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» I don't know what to do anymore
Sat May 26, 2018 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» 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


Please someone ., anyone with this help me:(

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Please someone ., anyone with this help me:(

Post  Claire1031 on Wed Feb 06, 2013 5:10 am

Hello .. My name is Claire and I have been diagnosed with vulvodynia about 2 months ago. I was devastated because I already did my research on it. I'm going to order neogyn tonight and have been doing pelvic floor muscle pt ..( which is very hard for me and uncomfortable) they prescribed me norontin and I've been on it before and had to go to the hospital because my withdrawals were so bad so I don't want that.. Does anyone think I should try this neogyn and see if it works .. I'm trying to have faith but I feel as though no one in my life understands the stress and anxiety of this condition.. Thank you to those who will take the time to give me advice I appreciate more then you know!!

Claire1031

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Re: Please someone ., anyone with this help me:(

Post  mcclave96 on Wed Feb 06, 2013 2:02 pm

You are one of the 1st people I have ever read that has withdrawls from neurontin.....i too suffered unbelievably!!! I just dropped down to 1800 a day(from 3600) and i am noticing after about 2 months it is starting to help a little. I have read that the cream you are referring too does not have great results....i'm not sure what your symptoms are, but from what i am learning the pain we have on our vulva is from nerves...which is where the PT starts to help. I would be careful of creams....once I stopped everything, but Crisco I have noticed a little improvement...I think all of the creams aggravate the vulva that was never really the problem(in some cases). I am also finding a little improvement when I had magnesium supplement to my vitamin regiment....it helps with inflammation...which is what my doctor believes is the ulitmate problem with me...I know most of what i wrote you won't really help but i know how desperate you feel!! I am so sad for all of us suffering alone!!

mcclave96

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Re: Please someone ., anyone with this help me:(

Post  jen007 on Wed Feb 06, 2013 4:50 pm

Hotmess,

I'm not a fan of commercial creams that advertise they help stop vulvar pain or cure vulvodynia. Usually these types of cream are just scams with false promises. Did you're doctor recommend this cream to you? I wouldn't put anything down there before consulting a doctor.

What kind of pain do you have? Provoked or unprovoked? Is your pain interior or exterior?

I'm asking these questions because, depending on the above, different treatments cater to different types of vulvodynia. In my case I had provoked pain where I only experienced pain when I was touched, also my pain was around the interior entrance area, around the rim, of my vagina.

-Jen

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Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 2:05 am

Thank you so much for replying first of all!! And yes I refuse to go back on neurontin I just think its a bad drug.. But as for the cream I'm kind of desperate and will do anything I have to to make the pain go away I have provoked localized vulvodynia and its definetly interior .. I feel like the pt isn't going to do anything until the pain in my vulva gets better .. This seriously is such a frustrating condition and I pretty much cry everyday and think about it 24 7 which is making it worse because of all the stress .. Anything I eat I'm like oh is this affecting it or how I sit or how I stand .. I have never felt so alone. I keep trying not to have self pity because I'm not like that and don't like to think this negatively .. Thinking positive is the way to go but it's literally impossible right now .. But about the cream I was thinking about the affects it would do to the inside of me. Does anyone else feel this alone and ashamed about this? I wish there were groups we could go to so we feel not so alone:(. I'm going to call my doctor tomorrow and ask about the cream. I already know she's going to say no but I will make the desicion.. Again thank you ladies for answering me you've made me feel not so alone for a couple minutes:)

Claire1031

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Re: Please someone ., anyone with this help me:(

Post  jen007 on Thu Feb 07, 2013 3:51 am

I had experienced the same pain you're feeling now. I'm going to be honest with you, the cream most likely won't work, in my opinion. The only cream/ gel that ever gave me relief was 5% lidocaine cream. It temporarily numbs the area you apply it to. I would highly recommend having your doctor prescribe it to you. It really takes the edge off when you're experiencing a lot of pain.

My doctor also had suggested for me to try pt, but told me in the end it wouldn't solve my problem. My pain was so bad I couldn't even stand to bare the cotton swab test. After 5 years of suffering and 3 years of treatments that didn't work I decided to have surgery to remove the affected areas which caused me pain. I only did it as a last resort. There was nothing else I could do so I figure what the hell...what else could I do? It was the best thing I ever did. I'm no longer in any pain. It doesn't always work out that way for everyone, but my doctor assured me that with the type of vulvodynia (the same as yours) the surgery would be a success. I would take to your doctor about it, but only as a last resort kind of thing. Try everything you can until you've tried it all before considering a vestibulectomy.

But definitely do give the lidocaine a try. I've even heard of some women using coconut oil or crisco down there to sooth the area.

Don't feel alone! You've got a great group of ladies here who do really care about all of the members here. There's always someone to talk to! Stay strong!

-Jen

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Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 4:15 am

Thank you jen I really appreciate it! I do have the 5% lidocaine and sadly that doesn't work for me at all .. I put it on before sex but it is still absolutely excruciating. I want to do the surgery but I know they will not do it until I've tried everything .. I need to just chill out about the whole thing .. I'm just getting mixed info so it's aggravating. I need to stop stressing its just so hard .. My boyfriend just told me it makes him want to cry because of how I can't stop thinking about this and can't stop looking up research .. He knows how much it's killing me. Everything's going to be ok I just have to keep telling myself that .. Thank you for making me feel better though .. I'm going to ask about the surgery next time I go to the doctors and shell prob laugh at me but its worth a try! Thanks again !!

Claire1031

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Re: Please someone ., anyone with this help me:(

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