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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
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.

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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 …

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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


painfree for 3 years!

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painfree for 3 years!

Post  ilseke on Mon Aug 03, 2015 1:50 pm

I'm from Belgium and I have suffered from vulvodynia since I was 20. Back then gynaecologists found nothing wrong with me. I visited a lot of them...When I was +/- 35 I watched "embarrising bodies" on tv and heard of 'vulvodynia'. I knew that was it. I searched for a doctor who was specialised in it. He prescribed PLO-gel with 4% gabapentine. I applicated it for about a year and it resulted in three ab-so-lutely painfree years!!!!! Now the pain starts again and I will use the gel again. We all deserve a painfree life with nice sex. Don't stop dreaming about it!

ilseke

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Re: painfree for 3 years!

Post  A2015 on Mon Aug 03, 2015 6:04 pm

Hi Ilseke,

It is encouraging to read the words "pain free", as I don't see it written often.

I had VVS when I was on the Contraceptive Pill, when I stopped taking it, I was also completely pain free and normal.
This year, I have VVS again after a yeast and bacterial infection.

Could I ask if you could describe your symptoms in some more detail? Was/is your pain confined to the vestibule and did/do you have redness/inflammation?

How did your pain start when you were 20 and what has caused the pain to begin again?

I am from London and want to ask my Vulval Dermatologist if I can be prescribed Gapapentin cream here.

Thank you so much,
A2015

A2015

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painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 8:19 am

Hello

It started combined with my first sexual relation. My doctor (gynaecologist specialised in vulvodynia) says that's not uncommen. I had a lot of vaginal itch and pain: candida after candida infection and after several months it developed into vulvodynia but the vestibular variaty. I only had (burning raw) pain during intercource. If jou consider the vagina like a clock, my pain is located at 12h, where most women have it at 6h. The groep of 6h should be less resistent to therapy, according to my doctor. He said i had to use it for 4 or 5 months. With no result after that i should give up. But i just kept on using it for about a year and gradually the pain lessened and it stopped.

My gynaecologist was part of a multidisciplinary team with a psychologist, kinesitherapist and so on. But since i had experienced orgasms before my condition i didn't had to see them. And yes, after the pain subsided i experienced a lot of great sex and orgasms. cheers

I think it started again because i am vulnerable for it. I have a husband, so i have sex, wich often leads to mild candidasymptoms. And i didn't used the gel because the problem was gone.

It is still a less aggressive pain compared to when i was younger but i know it will become worse without the gel, so this afternoon my gel will be ready in the farmacy. Luckily i still had the original prescription and i just went to the towndoctor. I didn't have to pay him since he could copie my prescription and will give it to other paitients. I sent a mail to my gynaecologist. Should he say something valuable i will post it on this forum.

The gel is really expensive, but i need it. You have to buy a whole box of pills and you only need 1 or 2 pills to make the potion.

Gabapentine are pills for people with epileptica. They do something to the painreceptors in our vagina. (In Belgium that medicine is named Neurontine, but generic name is gabapentine)The pharmacist mix the pills (the powder) with a cream that is most often used for vaginal use: Pluronic Lecithine Organogel. My original prescription was 4% but there also was a note on it to prepare the gel 6%. My towndoctor prescribed me the 6% one. I hope to suppress the painreceptors rapidly... I wrote you the prescription below.

prescription for 100g gabapentine gel (4%):
take 10 pills Neurontine (or generic) 400 mg capsules gabapentine
make them into powder
look at the weight of the powder
calculate mass of pluronic hydrogel* (PLO)-fase=80% x (100g - weight of powder)
mix powdermass and PLO
add lecithine (ad 100g)
mix untill gell is homogene

for 6% gel use 15 capsuls of 400mg
* can be ordered at Fagron ( Fagron PLO kit 200g, code 2399350)


Don't give up on yourself. Get that gel and applicate it every evening. After all, what alternative do we have?
Ilse


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Re: painfree for 3 years!

Post  A2015 on Tue Aug 04, 2015 9:44 am

Hello Ilse,

Thank you so much for your detailed reply. It seems my symptoms are quite similar.

I have redness of the whole vestibule, slight inflammation, sore/raw/burn to touch, vestibule skin tears during sex because the skin is inflammed/delicate (I tear at the 6o'clock and either side just inside the opening), frequent on/off itching of the vulva (even when there is no candida found), prone to infections.

Did you continue to experience candida infections during the 3 years you were pain-free without using the gel?

Did you notice any visible changes to your vestibule skin?
Every doctor I see tells me my vulva looks "normal" to them, but I know for a fact it is red/slightly inflammed. I can say this with certainty because when I was cured from VVS after coming off the Pill, my vestibule skin tissues returned back to their normal colour & I knew I was 100% healed. When it started this time after an infection, I knew my VVS was back.
I am concerned that any nerve relieving creams won't reduce the redness so I'll never feel fully cured, but I suppose I have to start to accept that I may not be fully cured and any treatment can just help.

Could I ask if you are/were ever on hormonal birth control?

Did your pain start again without being triggered by an infection, it just started to burn during sex again?

I think mine started again (after being absolutely pain free when I stopped the Pill), because I am vulnerable to VVS after having it once before. Perhaps my body has a memory of how it responded to an infection (when I had VVS before), and that's why my symptoms have come back.

I very much hope I am able to get this cream in the UK and that my Vulval Dermatologist will prescribe it to me. I will bring your description with me, thank you very much.

A2015

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Re: painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 3:06 pm

During the 3years i had sometimes an itch or candidelike symptoms, but very mildly, nothing that couldn't be solved with cold wather. I didn't have to take any medication. When i was 20 i had some monstreous candideinfections and they discolored my skin permanentely. I know that, because i can compare it. Doctors think it is just normal.
I never took birthcontrolpills. Maybe condoms are better because there's less bodyfluid and less chance to invoke an potential infection.
The vvs just restarted like that. At first a very little bit of pain, i didn't noticed it wright away.
But here we go again Wink

ilseke

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Re: painfree for 3 years!

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