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» Anyone been to see Dr.Claire Bailey in Birmingham?
Yesterday at 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Yesterday at 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


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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