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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 …

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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). …

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


been prescribed pregabalin....

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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Tue Mar 08, 2011 10:05 pm


Yes your right Sarah I thought of that today. Im not gonna come off the pregabalin unless I really does nothing. I will see in a month or so. I have had a good week and half with pain. Well good means the pain is medium not high.

But ive come off my period so cue flare up! at least I know thats a certain trigger. I tried the boots cotton pads, I think next period I will be brave and try tampons when Im not so heavy. The pads rub and so my vuvar is very upset today. I mean imagine if we went around rubbing a cloth all over our face 24/7 for a week! Im sure the skin on our face would be irritated to say the least!

Its so good for my anxiety that despite dizzynes Im loate to stop taking it. Oh dear I told you im a bit of a prescription drug addict lol On the plus side Im soon to be off citalopram in a months time. Im nervous bout side effects but to be honest ive been fine the other times Ive cut down so im crossing my fingers.


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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 1:42 pm

I suppse there's still time yet for both of us to have results, if we can just get past the dizziness and out of it sensation maybe a higher dose will help us. I use cotton pads but they still rub don't they? I mean it doesn't matter if they're cotton or not the mechanical rubbing problem is still there. I don't really have many heavy enough days to warrant tampons most of the time, 2 days of noticeable bleeding is the most I get then spotting for the rest so tampons just wouldn't be helpful for the light days. Damn periods, bring on the menopause!

I've had a change of heart about relaxing my pelvic floor first and decided I'd reached a plateau doing that and couldn't get any further because more relaxation set off my SI joints so I've joined you on the Glazer Protocol Sebby, started on Saturday so done it for a few days now. Let's see how we are in a couple of months time!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 7:00 pm


Woop woop! good to have a Glazer buddy lol!

Do you keep a pain diary? A good idea to monitor your progress. Im doing the online one that I posted about Smile it does graphs and reports so you can see how you are doing over a certain time period!

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Re: been prescribed pregabalin....

Post  Sarah001 on Wed Mar 09, 2011 8:13 pm

I hadn't even thought about a pain diary, I'm a bit all or nothing though and would either not put anything in it or put loads of irrelevant crap in it!! I've written on the calendar "started Glazer protcol" though so I know exactly when I started it. I'm also remembering to do 2 sessions a day this time instead of being hit and miss and giving up after a couple of weeks. So far my pelvic floor has only got tight during activities where it usually does, stress etc. I've also noticed when I'm doing something where my abs should be stabilising me I'm actually gripping the pelvic floor instead so I'm trying to stop that. God I hope the Glazer protocol works, I'm going to be so disappointed if it doesn't!
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Wed Mar 09, 2011 9:47 pm


Yep I hope it works too! My pelvic floor is still acting drunk! or unstable as Glazer would put it but im getting there.

I am due to email him on Saturday with my two week update so will post what he says on here.

Thing is with this protocol is its very all or nothing its months or intense work before seeing results..

I had a flare up after coming off my period yesterday and today im so much better! a one day flare up! this doesnt happen! Smile Im still doing the vaseline and water thing..helps so much

Ugh I have to do my biofeedback before bed...grrrrrr oh well lol


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Re: been prescribed pregabalin....

Post  Sarah001 on Fri Mar 11, 2011 8:19 pm

I was thinking about the amount of dedication today, I bet his research gets hampered by lots of women dropping out of the program because of the 2 sessions a day for months thing. I'm determined to keep it up and I'm one week in and haven't missed a single session yet. I'm totally determined to keep going this time, sometimes I do a session before I even get out of bed. I'm pleased it hasn't resulted in a tighter pelvic floor so far, I think the sessions of biofeedback I had were invaluable in that respect because I just wasn't relaxing the pelvic floor at all. I'm now managing not to let the work I do twice a day make things worse. I am however finding it difficult to stop holding my breath while I'm doing the pelvic floor work which obviously isn't what I'm supposed to be doing!! Rolling Eyes Can't wait to see what he says on Saturday.
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Re: been prescribed pregabalin....

Post  Sebby (Admin) on Sat Mar 12, 2011 5:49 pm


I too haven't missed a single session in two weeks! am so proud of myself lol I do it just before I get up to get ready for work and before bed.

I am writing a list of things to ask Dr Glazer before I email himl lol

He did say that at leat a quater of the women drop out of the treatment after a month or so. Also the holding your breath thing. He said not to even worry about that. When I contract I can't help but hold my breath and then can breath during the relaxation part. Dont focus on the breath just holding the contraction. You need to feel a sucking up of the sensor rather than just a squeezing..as if you are trying to suck it inside of you!

Do you have the machine that lets you see how stable your pelvic floor is? with the lights? The aim is to get to the letter J on my machine and hold it for 10 seconds. As my pelvic floor is unstable it goes up and down (mostly down as im weak also)

He said it takes a lot of practise to get the nack of holding it

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Re: been prescribed pregabalin....

Post  Sarah001 on Sat Mar 12, 2011 9:43 pm

I don't have a machine I'm afraid, I'm having to just do without, need all my pennies for my imminent move! I have got a simple plastic pelvic floor educator thing though that moves if you do it right and shakes if you're struggling to hold the contraction so that's an option. Are you feeling like you're using a light contraction getting to J or a strong one?

I'm surprised he isn't fussed about the breathing, my physio is very strict about that as the pelvic floor and diaphragm should work together but it might be because I have to learn how to use mine functionally again from scratch to stabilise my pelvis. I'm a habitual breath holder in daily life too and it makes me clench my pelvic floor when I do it so maybe that's why I've been told not to do it! Rolling Eyes I'm making myself breathe at the same time as a contraction so it doesn't get to be a habit, holding my breath every time I need to use the pelvic floor that is. Leon Chaitow actually gives faulty breathing as a possible cause of pelvic floor dysfunction because of the PF/diaphragm connection. I found a really interesting article about it a while ago but can't find it now. He's got a specialist interest in faulty breathing and has branched out into the PF because of the connection. If you can find it it explains it better than I have.

Let us know how your Glazer chat goes! Wink And I'd love to hear how much of a contraction you feel you're using as that advice varies from therapist to therapist too. I did poke my muscles tonight just inside the vaginal opening and they are still seriously sore if pressed so I may have to give them a bit of an eye watering massage a few times a week too.
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Re: been prescribed pregabalin....

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