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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 …

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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 …

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 …

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Using a TSE Machine

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Using a TSE Machine

Post  Sebby (Admin) on Wed Sep 15, 2010 8:31 pm


Hi all

I have just begun to use a TSE/TENs machine just to see how it goes.

The TSE is stronger than an normal TENs machine and my mum has lent it to me to see if it works.

I have to use it everyday and supposedly the pain relief builds up over time. Currently using it for bout and hour and a half to two hours in the evening.

Its suppossed to interupt and calm the nerve signals that travel up and down the spine.

I feel like a cyborg tho all strapped up lol Laughing

I will do it for about a month and see if I notice any benefits

Sebby
xxx
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Re: Using a TSE Machine

Post  Husband on Thu Sep 16, 2010 3:32 pm

HI Sebby;
Do you have some special instruction to adjust the tens? The recommendation from my wifes doctor was:
15 min 10 Hertz and 50 microsek pulsduration followed by 15 min with 50 Hertz 100 microsek for both 10-100 mAmpère.

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Re: Using a TSE Machine

Post  Sarah001 on Thu Sep 16, 2010 6:51 pm

I've seriously considered a Tens machine Sebby so I'll be really interested to hear how you get on. For me it might help with my joint issues too so fingers crossed for you.
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Re: Using a TSE Machine

Post  Sebby (Admin) on Tue Sep 21, 2010 7:04 pm


Hi Husband..my machine does TSE as well as TENS...TSE is a bit different and is supposed to be stronger but Im just learning to work it!

I will deff let you know how it goes Sarah

Here is the link to the site my mum bought it from if you want more info

http://www.acticare.com/

Right im off to plug myself in!! Im a cyborg now!! Laughing

Sebby xx
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Re: Using a TSE Machine

Post  Sarah001 on Tue Sep 21, 2010 7:50 pm

Very interesting, where are you placing the pads? I've heard they can go either on the stomach or on the back?
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Re: Using a TSE Machine

Post  Sebby (Admin) on Wed Sep 22, 2010 6:10 am


With this machine I have to place one pad at the top of my spine just below my neck and the 2nd pad on the lower part of my spine, just below bra strap, but I put it a little lower.

On the first setting the pads tingle and go hot..it feels funny lol

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Re: Using a TSE Machine

Post  Husband on Wed Sep 22, 2010 7:34 am

http://www.amazon.de/Promed-352410-Reizstromger%C3%A4t-emt-4/dp/B000ZJ2F18/ref=sr_1_2?ie=UTF8&s=drugstore&qid=1285140555&sr=8-2


The link is in German but its obviously different from your machine. With an additional vaginal applicator it is going to work direct in the problematic area.

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Re: Using a TSE Machine

Post  Sarah001 on Wed Sep 22, 2010 11:19 am

Hmm, don't think I'd fancy a vaginal applicator version! Sebby on another vulvar site a woman found wearing the pads either on the abdomen either side of the belly button and just below, or on the very low back over the sacroiliac joints or a bit further down on the glutes if necessary was very effective, she noticed an immediate effect from hers and wears it all day long!
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Re: Using a TSE Machine

Post  jules on Sat Sep 25, 2010 5:42 pm

I'm interested to hear if this machine helps. Sebby, did you ever have your spinal block? how long is the tens supposed to help for? is it something you would have to do on-going? i hope it helps.

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Re: Using a TSE Machine

Post  jules on Sat Sep 25, 2010 5:46 pm

Hey..i'm not too intelligent. i looked at the site and the price. i don't know how to convert your money into American money..i'm lost. can you tell me how much your unit costs w/ the accessories that you needed to buy as well?


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Re: Using a TSE Machine

Post  Mouse on Sun Sep 26, 2010 2:18 am

Jules, just google currency conversion. Like the link below, obviously change whichever way you are converting.

I google my whole life - it's how I ended up diagnosing myself and sending the info to my clueless gyny who still didn't get it. I don't suppose this story is new to any of us though.

http://finance.yahoo.com/currency-converter/?u#from=USD;to=GBP;amt=1

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Re: Using a TSE Machine

Post  jules on Sun Sep 26, 2010 8:20 pm

will do..thanks! you forgot to answer the rest of my question. did you ever get your spinal block? if so, any results?

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Re: Using a TSE Machine

Post  Sarah001 on Mon Sep 27, 2010 12:03 pm

I had a look at the TSE achine and unfortunately it's out of my price range so I've ordered a normal TENS machine instead and will let you all know how that goes.
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Re: Using a TSE Machine

Post  Sebby (Admin) on Wed Sep 29, 2010 8:55 pm


Sorry girls this last couple of weeks has been mental!!

Im still chasing up spinal block!! grrrrrr I will phone hospital again next week when fings have calmed down and complain

Im still using TSE maching only managing to use it every other day at present..

Have had good week with the pain anyway, maybe Ive just been so distracted Im focusing less on it? or the maching is working!!

Having problems at work so am quite stressed grrrrrrrrr


Godbless you all

Sebby
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Re: Using a TSE Machine

Post  Mouse on Wed Sep 29, 2010 11:28 pm

Sebby I had the pain therapist yesterday she's all about stress reduction at the minute. And encouraging my fat little body into doing some exercise to reduce it. She used the endorphin word. I've been meaning to get some of those, they sound like fun.

Distraction does work a treat, that's why the mindfulness helps. But stress is a bastard, I'm pretty sure that's what kicked off the coeliacs and then that domino fell onto the bartholins and here we are with vulvodynia! I would have chosen a different route, say one that involved laying down for hours, soothing massages and drinks that come with umbrellas.

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Re: Using a TSE Machine

Post  jules on Thu Sep 30, 2010 3:12 am

Exercise is important and does make you feel better. However, I am in a hell of a lot of pain because i started working out again. I am mad as hell that i can't work out like i used to. I know i have said this here before, but i need to get it out. I think i am in the anger stage of grief (about the loss of life before Vulvodynia). Oh well, i just have to be careful and accept that things likely will not be as they were before this disorder. Still need to get back to the physical therapist. i feel like it is my last hope since i have tried almost everything.

"husband"...let us know if the botox helps ur wife. i will try it if it does. I'm reaching for straws here.

thanks for listening or reading.

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Re: Using a TSE Machine

Post  Mouse on Thu Sep 30, 2010 4:45 am

Jules, funny you should mention the grief cycle. I know the one size fits allness of the Kubler-ross grief cycle is no longer popular because everyone does it differently and there is no wrong way. BUT I did all of the stages except for bargaining - what would be the point? When I got really mad, that's when I found the right people to help me. Acceptance is a bit of a stretch though.

It's ok to be bloody mad, fuck I'm so angry sometimes I could scream AND apparently I should. It's unhealthy to internalise your anger but I don't like dumping my crap on other people. My dog is way too cute to kick hmmmmm maybe the cat but I'd have to sleep with both eyes open even though she sleeps outside.

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Re: Using a TSE Machine

Post  Sarah001 on Thu Sep 30, 2010 12:24 pm

Could be the machine is working Sebby, I saw a lady on another site say she had fabulous results with a TENS machine which is why I've ordered one!
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Re: Using a TSE Machine

Post  Sebby (Admin) on Mon Oct 04, 2010 9:03 pm


Haha yes deff the drinks that come with umbrellas!!

Am taking one day at a time with the bloody anxiety, does me head in!

I have the machine on this evening..wow it makes me hot lol Im charging like a mobile phone!!

I have noticed a reduction in pain but I wont get all excited yet as this thing does come and go so I will see if I have a flare up and how severe it is.

Well at least the pain is managable at the mo... phew! now I just need to sort my brain out!!
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Re: Using a TSE Machine

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