looking for support australia

Hi all,
Ive had Vulvodynia for 6 years. My issue is mainly the chronic pain in the vulva area it is debilitating. Ive had four children all natural labours and they have nothing on this horrific pain. I have been on amiltriptaline for 4 years which helped the pain but then just stopped working over night. I am on nortriptaline and lyrica which are keeping the pain at 5/10.
I wish one day my vulvodynia will go away but I really doubt that will happen.
I feel so alone and find myself retreating from friends. None of my friends have even heard of vulvo and they try to understand but its impossible. My husband has been very supportive although I try not to talk about it as I feel every one has had enough. I do my best at work but every day is just acting to get me through and when I get home im exhausted and frustrated.
Is there any one in Australia that I can communicate with about vulvodynia???
Thank you fro reading
Zarli

I'm not from Australia but have you tried anything other than medication? I take both Ami and Lyrica and the Ami didn't help at all and the Lyrica also stops working overnight and needs a higher dose too, I think your body gets used to them and you need ever increasing amounts or more tablets adding which is why finding the cause is so important. How did it start? Anything you can think of that contributed to it starting might give you more idea of where to start treatment wise. A good book to help with this is When Sex Hurts which isn't expensive and widely available from Amazon.

I have tried everything I can think of. But thank you for your reply, I will keep trying any new ideas I can find. Have you still got vulvodynia or did you find your cure?
kind regards Zarli

Hi Zarli

I am in Australia. I have also tried just about everything, have seen all the recommended specialists, you name it, but still struggling.

Are you in Sydney?

Ruth

Hi Ruth
No I am not in Sydney, I'm from Melbourne. I have had some good results in the last week since visiting The Royal Womens Hospital in Melbourne there Vulva pain clinic. Please feel free to contact me via my E-mail and I can give you more details
Kind Regards
Zarli

what kind of pain do you have, zarli? I have stabbing, electric shocks and vibrations, aching. no burning.
I can't find anyone else with these symptoms

Hi Mary Jane,
My main pain is aching a lot like neuralgia, stabbing, tingly, and a pain hard to describe but its like I'm numb but not, and no burning but some times itchy. I also have pain all on my left side of body at times which does seem to be getting worse and I also have irritable bladder. The only time I had vibrations was in the initial stages of my vulvodynia it was like my nerve endings were a buzz all around my vagina. I do know that nerve pain can create such a wide variety of symptoms so try not to feel alone with yours. I remember my first 2 days of vulvodynia I had this really weird bright red rash on my left thigh I freaked out but it was gone before my Doctors appointment and it hasn't come back, I remember a lady years ago on a different forum having this problem and she also had burning mouth syndrome she couldn't find any one the same in the 5 years that she had V until I came along and said YEP that's me too, so don't feel alone please. My burning mouth has gone so that's a positive !!

Here for you any time, YOU are doing a great job.
Take care xxx

that is a lot like what I have...so I do have neuralgia after all...at least I know now
oh, Zarli, let there be a miracle for us

Yes Mary Jane l'm counting on a miracle !! They do happen ...