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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» 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


This 3 year nightmare.

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This 3 year nightmare.

Post  MissMegan1987 on Tue Feb 25, 2014 1:47 pm

I have been reading these forums for about a year. For tips...for a cure? My vulva issues (and anal-area issues  Mad ) started a little over 3 years ago. Prior to this I never even had a yeast infection. The itching and irritation would come and go-for about two years I thought it was allergies (seasonal? diet?). Then I thought it was yeast (and so did my gyno) and I was on diflucan for months which never did a thing. I finally decided to be pro-active and try to find a treatment because my vulva was beginning to run my life.

I have seen a few GP's and diagnosed with BV, yeast...a regular gyno a few times who biopsied and sent out the sample and found no resistant yeast. I was have been prescribed many anti-inflammatories/steroids (even though no inflammation/irritation was found). I saw an infectious disease gyno who referred me to a pelvic floor specialist who put me on Gabapentin cream (which POSSIBLY improved it SLIGHTLY or it could have just been a few good months-because it is back with a f*cking vengeance) who referred me to PT and a vulvodynia specialist gyno. He told me to discontinue the PT and put me on Neurontin (which seems to help only if I take massive doses-and then my prescription is gone in a week-awesome). I have been on Elavil for 2 weeks (havn't felt a twinge of relief-I know it takes time but I have doubts).

This is baffling. It is running my life. My symptoms are itching, irritation and burning (like someone is holding a torch up to my vulva and ass-crack and bees are stinging it and throwing itching powder on it). It is hard to function. I have been extremely depressed. I feel for all of you. My doctor is baffled as well and if the Elavil does not work then he suggested "pain management". Awesome. Prayers for everyone.

MissMegan1987

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Re: This 3 year nightmare.

Post  Zbrown on Thu Apr 24, 2014 11:37 am

This sounds quite similar to me :/ did u ever get some relief or help ? Xo

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Re: This 3 year nightmare.

Post  Alana3 on Thu Apr 24, 2014 1:50 pm

There are other meds you can try and other things you can do than just Elavil. If that's the only thing that doctor is suggesting, I would try a new one! I got a compounded gel type thing I had to put down there 3 times a day. It didn't work for me and I eventually did get the surgery, BUT my doctor said he could tweak it and it might help- but after finding this doctor I had had enough and been fighting this for 7 years I just opted for the surgery for a permanent solution. But there are other meds and such to try! Remember also, this isn't the ONLY doctor available who specializes in vulvodynia, so if he/she isn't willing to look past Elavil, I would find a new doctor. That's me personally tho. I feel for you really. This whole business is horrible.

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Re: This 3 year nightmare.

Post  MissMegan1987 on Thu Apr 24, 2014 2:01 pm

I have been on the Elavil for a few months and I think it's helping a little. I did gain a few lbs since being on it, which blows. If I take the neurontin it seems to really help-the combo of the two, although I always run out of my neurontin prescription early because I take to much as it only seems to last a few hours. I have been to so many damn doctors it's frustrating and I'm sick of finding a doctor and going through the whole process. It has been under control for the time being, but it could just be a good month. I am glad I at least know what the deal is, finally. I went through years of taking every yeast medication/herbal remedy there was, all kinds of medication and shoving all kinda of weird stuff up the vag thinking it was some sort of infection. I just don't understand why our bodies do this to us. Growing up I never even had a yeast infection. Now just looking at my vag irritates it, I swear.

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Re: This 3 year nightmare.

Post  Alana3 on Thu Apr 24, 2014 3:24 pm

Yeah, I gained a few pounds on birth control too. Just keep eating healthy and exercise! I understand everything you're saying and at least you have a good month! I stopped getting periods which helped me so much. But I also have endo and adeno so for me it was worth it to gain 5 pounds and have no periods and no pain Smile but it may help with vulvodynia too! Who knows really?

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Re: This 3 year nightmare.

Post  MissMegan1987 on Fri Apr 25, 2014 7:25 pm

I am not on birth control-I went off it a while ago because I read it can cause/irritate vulvodynia. I gained weight from the Elavil. I have been eating like crap though-but it definitely makes it hard to control my eating!! My V gets worse before my periods for sure. I didn't find birth control helped at all. The V just comes and goes. It has a mind of it's own. With stress it is way worse too. It has not been controlling my life lately. It does go through periods where it is so bad I obsess over it constantly and try everything to make it better. I hope it goes away one day. I get worried about having kids later in life and how it will affect me but we just have to take it one day at a time.

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Re: This 3 year nightmare.

Post  MissMegan1987 on Fri Apr 25, 2014 7:26 pm

And yes-I agree gaining 5 lbs is worth it if the medicine HELPS. But I don't find that the Elavil makes a huge difference. Maybe a slight dent in the irritation, but I will continue taking it because I am afraid going off it my V will be much worse.

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Re: This 3 year nightmare.

Post  zarli on Sun Apr 27, 2014 10:52 am

What is elavil ? Is it the same as lyrica or amiltriptilyn ?

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Re: This 3 year nightmare.

Post  MissMegan1987 on Sun Apr 27, 2014 12:12 pm

Elavil is the brand name for amitriptyline. It's a little easier to spell.  Embarassed 

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Possible remedies for u?

Post  EverythingIsDifferentNow on Thu Oct 09, 2014 5:53 pm

-exercising DAILY
-take warm baths, and try having the warm or hot water spill on your lower back right above your butt or have warm water spill directly on your vagina or anus and leave it there until you feel a little comfort (helped me)
-take 4 pills of calcium citrate (no harmful chemicals, natural)
-low oxalate diet?
-gluten free diet?
-anti-fungal diet?
-pelvic muscle therapist?
-EDMUAID (all natural ointment, 98% success rate, can buy online)
-buy heating pad and place on abdomen or lower back, can release any tension in that area that may be bundling your nerves around that area, thus sending less pain signals to your brain
-try to be stress free as possible
those are a few. email me if you want any more advice. don't lose help i've been dealing with this for a year, maybe more and i feel a lot better, so can u. If your body felt better before you experienced this condition, it can feel better again sunny

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Re: This 3 year nightmare.

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