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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 3

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: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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

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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

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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

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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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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

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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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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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Re: Anyone from Queensland Australia?

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