Is any one still on here from Melbourne Australia ?

Hi all, just wondering if any of you lovely ladies from Melbourne or Victoria are still on here ??

Hi love,

I am if you want to talk to me I would love to.

Hi wow so nice to hear from you. I would love to hear about you and your vulvodynia. Like do you attend the royal women's hospital vulva pain clinic or if not do you get help from some other specialist in Melbourne ? And what are your symptoms ? Etc. Pm me if you like.

I tried to send you a private message but i dont think it worked!

maybe try and send me one

I got it . I have sent you one.

Hi girls,

Im from Melbourne too. Had vulvodynia for 8 years.Have been looking for a support group in Melbourne for a while.

Having a really bad pain flair at the moment, have been off work for 3 months. Feeling very low & upset. Which after knowing what I do about this condition & what nerve pain can do to the brain it is understandable.

None of my usual techniques are working so not sure what else to do but search out an understanding ear.

Thanks

Kate

Hi kate im from close to Melbourne im going into my 7th year with vulvodynia but I have had lots of success from medication over the years. I would love to actually meet someone else with vulvodynia face to face I think I would just cry with the emotion of this hell of a condition. Please tell me what you have tried and what specialist you go to ?

Hi Zarli. Thanks for getting back to me. My story is long so il try and sum it up. Ive been to many specialists, also the chronic pelvic pain clinic at royal womens & currently waiting to get into the new vulva clinic there too. Medications ive tried: endep, lyrica, topamax, valium, endone(morphine) also a different brand of morphine ( cant think of its name now) Another opiod in the form of a patch. Internal Physical therpy does nothing for me. I believe my pain causes the tighter muscles as when I have no pain my muscles are not tight. I believe the extreme nerve pain is caused by a recurring infection that cannot be picked up at your regular gp. Ive read an interesting article about this type of vulvodynia that some aussie gynos wrote. Im waiting to see another gyno so I can show her the article. When I dont have the extreme nerve pain & just a sore feeling lidocaine 5% seems to ease the feeling. But its so strange because ive gone well for the last year and a half to two years & now in this pain flair im just up & down on what feels like a cycle of excruciating pain/infection. This is just a theory I have about the infection as I am at a loss as to how to get this pain flair under control. Sorry, I did hope to make it a short explanation but I have left out the 6 years before this What meds have helped you? Im exactly the same with crying with emotion. Ive been having suicidal thoughts. It just doesn't seem right to be in this sort of pain. Take care

Thanks for your story. Well yes very similar to me. I have been on a mission to find something that could have happened to the nervous system that caused my nerve pain but there are no facts they just say stress can harm the nervous system. I am currently waiting to hear about my next appointment in Melbourne as I had to cancel my last visit as my son was sick and it takes me 3 hours to get there. I will let you know and if you would like to meet me that would be lovely. I have had many dark episode of thinking bad things like suicide but I just keep trying, when your going through hell keep going. .. my medication generally works well except if I trigger the pain by sitting to long or im under alot of stress or anxiety. Anyway I can give you my email If you like I will pm you it contact me if you ever need to
kind regards