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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» 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

» 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


I'm back - advice on treatment and biofeedback

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I'm back - advice on treatment and biofeedback

Post  Tyger on Thu May 03, 2012 4:13 am

I just wanted to jump back on these forums, because finally I'll be pursuing treatment (again!) and I need some advice and reassurance.  

I wrote my history so far in this thread: http://www.vulvodyniasupportforum.com/t362-my-story-my-experiences-my-life-with-vulvar-vestibulitis, but in a nutshell, I'm almost 28, I live in Melbourne, I have provoked, localised vulvar vestibulitis.  Basically, it hurts when I have sex, the whole way through the act and I am tender for a day afterwards, and it stings slightly when I pee.  I have suffered from this since I was 18, and had pain-free sex for 6 months before it began from a yeast infection.

I should say that I'm really good at ignoring this condition, and being in denial about it.  When I was seeking treatment after first diagnosis, it made me so depressed focusing on it, so after some failed attempts, I stopped.  I grit my teeth through sex and get on with it, and then don't think about it the rest of the time.  This has gone on far too long now, and what used to be a healthy sex-life is now turning into a boring, painful mess as I get older and more fed-up, and my libido slows down.  I can't just keep ignoring it.  The days where I could enjoy sex and embrace the pain are gone - this is not normal.

Treatments tried (and failed) in the past: long-term anti-fungal called Nizoral I think, and Amitryptiline anti-depressant, for months slowly increasing dosage.  No response to either.

I have been reading a lot about biofeedback.  I always assumed there was some kind of medication I could take that would fix it, if I tried enough avenues, and I thought biofeedback was such a wishy-washy treatment. But now that I look into it, it seems there's something to it.  I didn't think I had problems with my vaginal/pelvic muscles, but my partner has told me over the past few years that I'm extremely tight down there. I should have assumed, from common sense, that I'd be experiencing reflexive muscle tightening because of the sex pain, and I don't know why I thought this wasn't an issue.


So I suppose my questions are these.

Have you had success with biofeedback and dilators, especially with localized provoked?

Have you heard of/had treatment with Marek Jantos, and are his methods effective?

How long does it take to start experiencing progress?

What exactly IS it? What do they do to you?

Is biofeedback/dilators a good fit for somebody with vestibulitis, or should I seek more medication-based treatments first and foremost?

My biggest issue by far is financially... these treatments are all extremely costly in Melbourne and probably all over the world.  I'm going to go back to full-time study next year, and I don't have a lot of savings, plus I already asked and a lot of the specialists aren't covered by any form of private insurance.  I wish there was some kind of guarantee that this stuff is going to work!

But I'm desperate now, and I have been extremely upset the past few months.  I can't ignore it any more.  Any advice would be greatly appreciated! I'm so glad there's support like this out there... I don't know where I'd be without it in the past.

Tyger.
 

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Re: I'm back - advice on treatment and biofeedback

Post  Sarah001 on Thu May 03, 2012 12:08 pm

I've done some biofeedback, basically they insert a vaginal probe (or you insert it yourself if you prefer) then wait a minute or two to see what your resting tone is followed by testing how well your slow twitch and fast twitch fibres work by giving you quick and slow contractions to do with the emphasis on the relaxation part to teach you how it feels to have the pelvic floor relaxed. Once you can relax it better they progress to exercises to suit the individual and go from there. That should also be followed by trigger point work of the pelvic floor to increase relaxation. I can't say how well it works because I have severe pelvic instability so have to stabilise my pelvic before I can fully relax these muscles but I did manage to lower my resting tone by quite a bit and it took my generalised unprovoked V towards being provoked at the time so there's something to be said for it.

I know Aussie (Claire) went to Marek Jantos and made progress with him but I'm not sure if she's still around or not. There's no reason why you can't pursue medical options at the same time either.

Dilators are to gradually stretch the superficial pelvic floor and if I use mine religiously I do feel improvement but again I can't go mad because of my pelvic instability. I leave mine in place for about 15 minutes before I go to sleep at night and I'm currently on the 3rd dilator but with no movement. They can also be used to stretch the pelvic floor and press into trigger points but again gently and gradually.

Let us know how you get on!
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