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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 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


any advice please, I'm at my wits end :(

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any advice please, I'm at my wits end :(

Post  sailor_moon on Mon Oct 05, 2015 4:18 am

Does anyone else suffer visible redness/inflammation? I do, from my urethra down on my inner labia and either side of my inner labia where it meets the outer labia in the 'crevices' so to speak. It is always the same areas that are red and inflamed. And so so so itchy. My burning is confined to either vestibule but I itch worst from my vestibule up to my urethral opening.

Does anyone else suffer any redness at all ,and if so, does it get redder and more inflamed during a flare up?

I am at my wits end here, I feel like saying to the doctor just give me a nerve block and if that doesn't work cut the frigging affected skin out...but obviously my urethral skin and inner labia cannot be cut....it is a very scary thought, I don't want to be left looking deformed down there either. I feel like I am going insane. I think about my vulva 24/7.

I want to have a baby but with the possibility of pudental neuralgia, pregnancy would make it worse...I can barely cope day to day now.

Has anyone been pregnant with vulvadynia and inflammation down there? did it make things worse?

I also have white stuff that looks like little tiny bits of flaky wet toilet paper coming off me every day, stuck in my crevices where I itch . IT IS NOT LICHEN SCLEROSIS, I have had 2 biopsies that show only inflammation. I do not have white patches of skin either. And steroid cream makes everything worse. It is not smegma because I shower twice daily and keep the area clean. Does anyone else have this problem? I did recently test positive for yeast, I have tried fluconazole long-term and clotrimazole and it has not worked. It was just candida albicans, not any other from of yeast.

I am literally getting teary-eyed as I write this because I feel like I have tried everything and nothing has worked. Nothing even brings relief. Sad

I have tried all steroid creams, Probiotics, Yeast treatment, PH balancers, Herb suppliments, any form of antiseptic, healing cream, zinc cream, baking soda baths, antiboitics, nothing has worked....what the hell do I do? Evven had a laproscopy and hystoscopy but no internal cause was found.

Even someone to chat to would be nice...I was on the secret FB group but had to leave due to someone trying to hack me and I can't risk anyone finding out I have this problem as certain people would make life hell for me.
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Re: any advice please, I'm at my wits end :(

Post  sgw11 on Mon Oct 05, 2015 10:12 am

Hey sailor_moon,

I just thought I'd reply, I know what it's like waiting for a response and not getting any! I also suffer from visible redness and inflammation. I recently went to my gynecologist and she said that some women's vaginas will just always have a more swollen appearance. After I have sex (which is rarely unfortunately), I do notice swelling, so I usually put an ice pack on there afterwards to try and reduce the tenderness for the following day.

I do not experience any itching like you, so I can't really comment on that sorry! However I did have pain around my vestibule, but that has gone since being on amitriptyline oral medication, but I still have provoked pain on my vulva. I know how you feel, all I seem to be able to notice is how my vagina is feeling each day, when it feels irritated, when I'm in pain etc. It's exhausting! And it makes me upset too. I've had this for over 2 years now and I feel like I've done bloody everything! Since my pain has become more localized, I am a candidate for surgery, however like you, I am unsure if I even want to do it! So much recovery time for something that may only just reduce the pain, not get rid of it entirely.

I have also never been pregnant so I can't comment on that question.

Please feel free to message me, whenever you need. We should always help those around us, especially someone going through this!

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Re: any advice please, I'm at my wits end :(

Post  sailor_moon on Mon Oct 05, 2015 10:27 am

Than you for your reply. I really appreciate it. I haven't tried Ami yet but I have tried Lyrica for 6 months which did nothing but make me fatigued and fat! I will ask my doctor about it when I see him this week, but he said if it were nerve related Lyrica should have helped.. though Amitryptilene is the number 1 drug for vulvodynia. Did taking it reduce the redness? I get swelling too...it sucks.

Surgery is such a scary thought, especially if it fails, it is a lot of time,money and changes the appearance of your vulva. I would hate to be left looking deformed and still be in discomfort!

I ended up having a massive big cry to myself earlier. I used to hardly ever cry...now I feel that crying alone by myself is all I seem to do when I have time to myself. I try to talk to people I'm close to but it always gets turned back on me, like "You must be doing or using something to be causing this", "There are people so much worse off than you", "Crying isn't going to help you" ect. So I pretty much just give up on trying to discuss it now I think.

Was your pain unprovoked? The doctor told me that itching can be a "milder" form of nerve pain. That itch turns into burn. I never experience the itch and burn together, it is either one or the other.

Thankyou again for your reply. I'm very active on here and in return if you ever need to vent feel free to message me!

I have been suffering 2 and a half years, around the same time as you so I dare say we must be on a similar level emotionally. This condition really is hell.

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Re: any advice please, I'm at my wits end :(

Post  sgw11 on Mon Oct 05, 2015 11:50 am

Yeah I've been on Lyrica too and it did nothing except make me experience anxiety which I've never suffered from before, so I got off it after about 4 months. My redness and swelling is more attributable to sex, so I'm not sure if it reduced the redness in general sorry.

Yep, I've been crying a lot more lately too. I'm going to see a psychologist about it in a couple of weeks and see if I can do anything to stop this disorder from making me so upset. It's so hard to remain hopeful.

My pain was initially provoked, then in the past 6 months or so it did become more generalized, but since I've been on the amitriptyline (for about 3 months now), it has returned to provoked, which is a minor win i suppose! I used to feel a burning sensation too when the pain was more generalized, like from sitting down all day etc.

Thanks Smile yep sure is! no doubt about that.

I just want it to be over!

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Re: any advice please, I'm at my wits end :(

Post  miss.panda on Mon Oct 05, 2015 2:21 pm

Hi both,

I suffer from a redness down there too and it used to feel a bit swollen after sex. Doctors have always said to me that my vulva looks normal though and that some women just have ones that are more red than others. I don't think the swollen feeling is normal though?

Don't give up sailor_moon Smile I know its easy to feel that way though. As you haven't tried amitriptline yet maybe give that a go?


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Amitriptyline

Post  amyhp on Mon Oct 05, 2015 7:23 pm

lils.panda, Has Amitriptyline worked for you? I have done Lyrcia and Cymbalta before my surgery and they did not help at all. Surgery had helped my provoked pain, but my unprovoked pain is still here.

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Re: any advice please, I'm at my wits end :(

Post  miss.panda on Mon Oct 05, 2015 8:37 pm

Hi amyhopexoxo Smile I have used amitriptyline in the past but I don't think I persisted with it long enough and I think I only tried a small dose so I'm going to ask my doctor if I can try it or something else similar again. The past 2 years or so I've been feeling like jusat giving up with it all but I want to start trying again to find a solution. I'm really curious with what the surgery was like? What exactly did they do or remove? Would you recommend it? Thanks Smile

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Re: any advice please, I'm at my wits end :(

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