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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


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!

Thanks,

Claire

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

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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?

JimJones

Posts : 4
Join date : 2012-11-22

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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
Endep
Lyrica
chiropractic

where abouts in QLD are you?

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

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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?

JimJones

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Join date : 2012-11-22

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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.

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

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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.

kazza65

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Join date : 2013-03-24
Age : 52

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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)

keepdreaming

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Age : 35
Location : Brisbane

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Re: Anyone from Queensland Australia?

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