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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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

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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
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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 …

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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). …

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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 …

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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.

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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 …

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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 …

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broke up

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broke up

Post  naomi on Fri Jul 09, 2010 5:05 pm

i cant believe ive just split from Matt because of this awful condition. I didnt think I could get any lower or worse.
Man it sucks I cant imagine life without him, i dont know what to do Sad
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Re: broke up

Post  Sarah001 on Fri Jul 09, 2010 8:15 pm

I'm really sorry Naomi, this has such a devastating impact on our lives. If you haven't got some pain relief yet I think you should go to your GP and ask for some, that will at least allow you a break from the unrelenting pain. Was it your idea to split up or your boyfriends?
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Re: broke up

Post  Sebby (Admin) on Fri Jul 09, 2010 8:32 pm


Oh Naomi, I am soo sorry to hear that. Did he break up with you?

Sending you ((((Hugz))))


xxxxxxxx
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Re: broke up

Post  tweety on Sat Jul 10, 2010 6:15 am

Hi Naomi,

So sorry to hear the news....

*BIG BEAR HUG* coming your way
xoxoxo

Sue

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Re: broke up

Post  naomi on Mon Jul 12, 2010 5:31 pm

hey there,

feel strong enough to reply today. I kinda guessed a while ago he wasn't fully supporting me as much as he could. Last week I sat down and explained that I needed more support i.e come round and see me at my folks more, quiet weekends away together, etc. I'd asked him before but it never happened, it was always me who suggested things. He said that he loved me less since Xmas (I choose since then to be more upfront and honest about how its effecting me, let him see me when I'm low, looking a state and in a state). I think he's more consumed in his own life than me...quite a selfish character. But it doesn't stop my feelings for him.

And another thing...I lent him my car whilst I was in Turkey (he sold his and looking for van). SO I got a lift back to my parents in the next town with a friend. On my return I went to his, didnt ask for a lift, caught the bus. When I asked him why he didnt even offer, he said the thought didnt even cross his mind! Thoughtless tit!!! I dont know why but this prompted me to talk to him....selfish shell fish!

I guess I choose to glaze over all this behaviour for months and months as I just have so much on my plate, I didnt want more stress of a break up. Also the main thing... I am just so scared of being on my own. I know this sounds horrid to say and I hate myself for even thinking it but I feel like a freak. If any male pays me any attention I feel like a fraud. I guess I've just got to learn to love myself before anyone can love me in future...looks like I'll be waiting a long time.

I know this condition isnt my fault and I shouldnt feel like a freak, but I do. I dont know anyone else in my life with similar symptoms apart from you guys on here, but not face to face.

I wish I could come to terms with this condition but I just cant. Its the head thing that really gets me down...positive thinking and all that, but I cant, I feel so low.


27th July
I have more biopsies being taken in Oxford by a gynae and a dermatologist.

29th July I have to go to Tribunal as the gov took all my benefits away and said I was fit for work.

Oh what an amazing few weeks I have that lay ahead Sad

I want the train to stop and let me off!!! But dont we all xxx

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Re: broke up

Post  Sarah001 on Mon Jul 12, 2010 7:33 pm

Frankly Naomi if he's going to be that selfish he doesn't deserve you, there are men out there who aren't like that. Also don't give up hope of getting better, you really don't know if this will resolve, the dermatology appointment might throw something up that's been missed.

A couple of tips for the tribunal, get yourself to your GP asap and ask for stronger pain relief, they take into account how much pain relief you are taking as a sign of how much pain you are in. Ridiculous I know because lots of us try and avoid painkillers but it will work in your favour to be on alot of pain relief when it comes to the tribunal. The second tip is if it hurts to sit DON'T whatever you do sit! Tell them you'll have to stand because sitting is too painful if that's the case or they will assume you can sit fine. Likewise anything that is painful that you would normally avoid because of this but feel pressured to do in a social environment pretend you are at home and avoid it, again if they think you can do things easily they will assume you could do it all day long at work. The absolute most important thing though is to get some more painkillers and get started on them so they know how much pain you are actually in, if they aren't working enough on the pain on the day make sure you tell them your GP is still trying to find a dose that helps you.

Try and focus your energy on yourself for now, put the selfish twerp out of your head and concentrate on getting through the appointments you have coming up and getting some painkillers that actually help. I know none of us know each other but we're all in the same boat so we do know exactly how you feel right now.
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Re: broke up

Post  naomi on Mon Jul 12, 2010 8:45 pm

yeh hopefully, the last dermatologist I was advised to see in London was so crap with me. Didnt examine me properly, then said I needed to get on the anti depressants as I looked glum (Dr E Edmonds). And diagnosed me with psorisis (sp?!) of the vagina. I asked for a second opinion and started seeing a new prof of gynae in London (Prof Allan Maclean) who said that was not a correct diagnosis. Saw him a few times since Sept last yr, tried diff treatments, took biopsies, no answers. Decided it was Lichen Planus so told me to see a new derm in Oxford (one I am seeing end of month again) who took one look and couldnt see any clue of LP. So in other words the last Prof 'passed the buck!!! grrrrrrrrr.

So this month I will see a irish gynae and also a Derm, a joint clinic. I will discuss pain relief with these guys thanks Sarah. My GP gave my stronger ibuprofen, apparently this was not right though as ib' is for muscle pain etc. My GP seems to be on cloud cukoo land with me!! then the prof said it was rubbish for that and suggested paracetomal!!

Any ideas what will take the discomfort away from my internal/external open wound??! Its not invisible to the eye and nerve damage, its just plain inflammed and horrible

these professionals certainly push you from pillar to post.

I keep saying to myself Matt=Twerp Matt=Twerp Matt=Twerp, hopefully it'll help! xxx
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Re: broke up

Post  Sebby (Admin) on Mon Jul 12, 2010 8:47 pm

Hi Naomi (((hugz)))

Right I am going to say it cos I cant seem to stop myself in such situations....Fecking Men!!!!! sorry I had to let that out

My ex (spit spit stamp) just could not be empathetic with my pain. It came on in the last few months we were together..he was being an asshole anyway and just continued to be an asshole...I had problems with my periods as well and the pain meds I was given and one evening he came round and I nearly blacked out and had to lie on sofa feeling so sick and dizzy.. he said I had ruined his evening!!!!!!!! then of course seeing what a barstad he had been apologiesd but I will never forget that!

Anyway im not saying your ex was like mine in anyway...im sure he doesnt have horns growning from his forehead lol

I know what you mean about the whole feeling like a fruad thing cos I feel the same, I see a cute guy and fink oh id love to flirt with you and then fink...oh but im only leading him on what can i offer blah blah blah

Just have sometime off for you, Ive been single a year and a few months and im glad ive done it Vulvodynia or no Vulvodynia. You will move on, i know it hurts so much at first but as time goes on (cliche i no) u feel stronger and stronger

Anyway ive met quite a cute guy (only 25!!) Im 29 by the way lol..we are not together or anyfing but kinda flirt and errrr kiss lol but he knows about the pain..i have not said the dreaded Vulva word lol just said pelvic pain (who knows what he imagines that is!)and that well intercourse (i hate that word too!) hurts me.

Well he has not yet run screaming for the hills yelling 'get her and her pelvis away from meeeee' so i hope this can offer sum hope

scratch

As for the dss...what bleep bleeps!! I should not swear so much! kick there ass hun they should not be treating you like this!!

I pray you feel better soon and keep in touch

Sebby
xxx
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Re: broke up

Post  Sarah001 on Tue Jul 13, 2010 11:59 am

Right Naomi, if your GP is crap see a different one at the practice or get yourself off to a GU clinic and ask them to have a look (they can prescribe pain relief). Ibuprofen isn't going to cut it at the tribunal, even if it double dose, you need to be on much stronger pain control than that both for your own comfort and for the DWP. Low dose antidepressants such as Amitriptyline are the usual first prescription and I know you said it wasn't nerve related but even with visibly inflamed skin (I have that too) it affects the nerves as they are in the skin so the same meds should help with the pain. Things like Tramadol might be worth asking about, that's a strongish opiate, but you do need to do this fast so it doesn't look like you only got the painkillers for the sake of the tribunal. I suspect you've been given the Ibuprofen as it's an anti-inflammatory and your skin is inflamed but as far as I can tell from researching Anti-inflammatories aren't effective for our problems.

As for the dermatologists you've seen, I'm surprised they can't tell if it's psoriasis or lichen planus from the biopsies they've taken. I hope the joint clinic you'll be going to soon turns out to be better.

And remember, Matt=twerp, Matt=twerp, Matt=twerp
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Re: broke up

Post  naomi on Tue Jul 13, 2010 8:37 pm

thanks Sarah I'm goin gto get onto it tomorrow. Tramadol...

I tried amitriptyline about 3 years ago but will try again possibly. Would be nice for a consultant to help take control of my treatment/care rather than it being a one woman band so to speak... sounds like we have all been there! My Mum and Dad are both coming to my appointment (its a family outing!!?!) so will be on-mass!! even though I will be under anesthetic and out for the count! ekkkkkkkk im bricking it again, I know what to expect. Might have to lie down or stand at the tribunal a few days after with a bag of frozen peas between my legs Very Happy
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Re: broke up

Post  Sebby (Admin) on Tue Jul 13, 2010 9:29 pm


Actually mite be a good idea to show how much trouble u have sitting at the tribunal. I have thought of asking my dr for tramadol until I see the pain clinic in August. I will take it for the really bad days. I know I shouldnt of but one day at work I was in so much pain and to top it all off had a headache and one of the girls only had tramadol so I took some and oh my!!!!! well even if I was in pain I didnt care haha good stuff, deff took the edge off.

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Re: broke up

Post  Sarah001 on Wed Jul 14, 2010 12:07 pm

It's absolutely essential to show how much it hurts to sit. Tramadol is a good one to take when the pain's bad, I used to take it for my joints but I personally had some problems with it because I had to take so many but something like that would be useful if you get on ok with it. If it causes constipation get some magnesium oxide tablets and take a couple a day which will stop that.
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Re: broke up

Post  Sarah001 on Wed Jul 14, 2010 12:11 pm

By the way Naomi, I'm going for biopsies in August so I can completely sympathise with how nervous you are! I intend to be drugged up so I don't feel much and then it's lots of salt baths for me.
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Re: broke up

Post  Sarah001 on Mon Jul 26, 2010 10:37 am

Good luck with your tests tomorrow Naomi! Let us know how you get on. x
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Re: broke up

Post  naomi on Mon Jul 26, 2010 1:31 pm

awww thanks for that. Funnily enough the ex Twerp hasn't wished me luck...too concerned with what sandwich to pick for lunch probably, or what to do with his weekend Very Happy

Got to be in Oxford at 7am tomo! so it'll be a 4.30am start...oh joy! and Ive got to wash in some orange body wash the nurse gave me 2 days before. And use a nasal cream...I think it is all in the name of cleanliness (mrsa).

At least it feels like something practical is happening, Im just waiting for the usual "I'm afraid I can't help you but I will refer you to x, they might be able to help".

Just want this week to be over. Not looking forward to the tribunal on thurs, I picture me under the spot light being harassed affraid ...friggin government! they wont win this one though, my auntie is coming up from Kent to be my representative, shes a teacher and she kicks ass! Wish they'd concentrate on getting the lazy layabouts back to work and not the innocent ones!

I need to right a list of questions I suppose to ask. This gynae is NOT going to dump me without a fight this time!!! (naomi fighting talk!!)
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Re: broke up

Post  Sarah001 on Mon Jul 26, 2010 1:49 pm

Good plan, I ought to be thinking about questions I can ask too I suppose! I've got to have my biopsies done while I'm awake and the truly terifying thing is my other conditions decrease the effectiveness of local anesthetics so I'm petrified I'm going to feel the whole thing. As far as dermatology goes they should be able to tell definitively which condition you do or don't have if they are any good, they should know all about what different things under the microscope mean so hopefully you'll either get something ruled in or out this time around!

Don't worry about the tribunal, you've got support going to help you so just get through this first appointment before you even think about that one. Good luck! x
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Re: broke up

Post  naomi on Mon Jul 26, 2010 2:04 pm

thanks hun!



The last time I had to have anesthetic was when I was about 11yrs old, to have teeth extracted. Apparently I woke up from it singing a boyzone song at the top of my voice (dont even like boyzone) and then started crying.

What song will it be this time? eeeeeeeeeeeeeeeeek! deep breaths deep breaths!
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Re: broke up

Post  Sarah001 on Fri Sep 30, 2011 5:23 pm

Take heart jewelsistas, this is an old thread and last time Naomi was on here she'd got a new bloke and pretty much forgotten the one in this thread!
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Re: broke up

Post  naomi on Sun Oct 16, 2011 1:48 am

hello jewelsistas and sarah001!

gawwwwd ive been rubbish on here, try to keep up to date with the facebook group but ive kind of put my head in the sand with regards to by lady la-la....finally got a more precise diagnosis...vulvar vestibulitis. And yes, a lovely boyfriend called Tom. Who is so supportive and kind. He suffers from chronic rhematoid arthritis and is very inspirational Smile the only link i have to the ex Matt is unforch some close friends but thats life i suppose.

hows everyone getting on anyway? no treatment as such for me apart from lidocaine 5% but im being a pussy (so to speak) and too scared to use as the skin is so fragile and broken down there im worried i'll hit the roof!!!

xxxxx
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Re: broke up

Post  Sarah001 on Sun Oct 16, 2011 1:07 pm

Well hello naomi! I was starting to think all the old regulars had gone for good! VVS often responds well to pelvic floor exercises and dilator work, I'm pretty sure you've already heard of it but www.vulvarvestibulitisrelief.com has some success stories using those. I have VVS and generalised V so I know how you feel about the VVS. Some of the girls on there have healed broken skin with seabuckthorn oil, I didn't get on with it but it might be worth a try for you, be warned though it's very orange and does stain underwear!

I'm glad you've got a great guy now, inspiration to all of us who've been dumped for having health issues. I'm currently trying to get a referral to an NHS women's health physio because I can't afford the private one now I live alone. It's proving difficult though, my GP only has referral capabilities to the small local hospital and they don't have a WH physio so she's trying for me but not getting far so I'm currently getting no help with my horrendous pelvic floor. If she can't manage it I'm going to ask the dermatologist I see about my V and if she won't do it then it's back to the fabulous doctor at the GUM clinic to see if she will. What a hassle. Nice to see you back here though and do keep dropping in! Wink
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Re: broke up

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