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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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 : 29
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 : 29
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 : 29
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 : 53

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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 : 36
Location : Brisbane

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Re: Anyone from Queensland Australia?

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