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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Anyone from Queensland Australia?

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Anyone from Queensland Australia?

Post  Aussie on Wed Mar 16, 2011 6:59 am

looking to meet up with someone that know's what I am going through. Lots of you in Melbourne and Perth but can't seem to find anyone in my area? I want to know if anyone in QLD is bieng treated at a Vulva Clinic at a hospital covered by medicare?

I am paying a fortune for my Physical Therapy, although its doing good...Its so expensive!




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Re: Anyone from Queensland Australia?

Post  JimJones on Wed Nov 28, 2012 12:29 am

Hey Claire,

Who is treating you in Qld and is it working? My GF and I are looking for options and yes they are expensive?

We have had some dealings with Marek Jantos but the intensive treatments are around $2000 for the week.

Have you had much progress and who have you used?


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Re: Anyone from Queensland Australia?

Post  Aussie on Wed Nov 28, 2012 2:34 am

Hi Jim,
I saw Marek for close to a year and did intensive therapy as well. I also once I felt a bit better saw a physio closer to home who was excellent. The therapy Marek did helped with pain with sex which is much better now, but not the daily pain I experienced. I am currently not seeing anyone. My vulvodynia went into remission for 8 months of my pregnancy, now it's back (daily pain and pain with sex) I have a referral for a gyn appt up at Nambour Genenral Hospital for after my baby is born. I am hoping the birth will stretch the muscles enough to make a difference.

In my case though I believe the muscles to be seccondary to the pain. My urine burns my skin as does my discharge, this makes me tense from pain, not the other way around. I barely had any isssues through the first 8 months in pregnanc, which leads me to believe hormones play a part and this has been the only thing that has worked sucessfully this far.

I believe Marek's treatment is more beneficial for people who have provoked pain only. I think unprovoked pain is on a different level.

I have tried:
various yeast creams tablets etc
steroid creams
lidocane ointment

where abouts in QLD are you?


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Re: Anyone from Queensland Australia?

Post  JimJones on Wed Nov 28, 2012 6:26 am

We are in Brisbane.

So you did the intensive therapy and saw him for a year? Did you still no to see him after the intensive therapy. That is for a week isnt it? My Gf only has the pain during sex and is seeing a physio this week.

We were just a bit nervous as he is not a doctor or physio and didnt want to waste money, but if you got results then I guess that is good.

Sorry to hear your pain has returned. Which Physio did you see that was excellent?


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Re: Anyone from Queensland Australia?

Post  Aussie on Wed Nov 28, 2012 11:15 pm

Marek is excellent.

If it's just pain with sex you will have no problems with the treatment. Try the physio first and if no luck see Marek as he is more expensive because he is the best. Make sure the physio you see is trained in HIGH TONE pelvic floor dysfunction and DO NOT do keegals (no contracting the pelvic floor).

I did not see Marek after the intensive week. I had spent too much. I felt brilliant until I sat back on the plane for a few hours to go home after the treatment. All the pain came back within minutes. I was so upset. But as I said pain with sex alone.... your going to have a way better shot Smile

Read '"Heal pelvic pain"" by Amy Stein.


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I live in Qld, Australia

Post  kazza65 on Sun Mar 24, 2013 6:12 am

I have just joined this forum and found your post, although 2 years old. I also live in Queensland and would be interested in connecting with you as I've had no support in 30 years and haven't seen anyone or had treatment for quite some years now as I didn't know what to do anymore as everyone gave up on me.


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Re: Anyone from Queensland Australia?

Post  keepdreaming on Wed Apr 17, 2013 3:46 am

Hi! I'm from Brisbane and also looking to get in contact with people from here! Let me know if you want to chat sometime.

Last edited by keepdreaming on Wed Apr 17, 2013 8:30 am; edited 1 time in total (Reason for editing : grammar)


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Re: Anyone from Queensland Australia?

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