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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

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: 1


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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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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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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