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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 1

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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


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


ilseke

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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

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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