I'm so glad I found this forum, because nothing else seems to have worked!

Hi, I'm a Sydney girl who has been very unwell for about 15 months now. I've always had gyne problems, which turned out a few years ago to be endometriosis, which my Dr operated on successfully. This whole saga started last year with what I thought was thrush which wouldn't go away, and I was given boric acid for it, and then I seemed to get what I thought was a UTI, and so went on antibiotics, but the pain got worse so it was assumed that I had a pelvic inflammatory infection, and so was given even stronger medication. Pain continued to worsen and so after xrays and ultrasounds I ended up in hospital for a laparoscopy, but my Dr said my pelvis was absolutely fine. It must be, he said, my bowel. So I waited for my appointment with a gastroenterologist, who said there was nothing wrong with my bowel. And so then I waited for four months for an appointment with a vulval gyne, who spent months trying to diagnose me, working down the list of possibilities with meds (flucanozole, cortisone, endep) and physio until she too said she'd run out of ideas. And so I'm now waiting to see a pain specialist who I'm really hoping can do something, because as it is I cannot work, walk, sit or drive comfortably, have sex or generally do anything much. Finding this forum has been amazing as I at least know that I'm not the only one with a mystery-illness and that there is some hope of finding relief. Thanks ladies for sharing!

Hey girl,

Im so glad you found this amazing forum! You can thank the wonderful Sebby for that

Basically, for a lot of us, we feel totally alone in this. Either doctors tell us were nuts, dismiss us, or totally give up on us. Thats why you just need to be extremely emotionally and mentally strong -- because, physically you may feel like crap. Plus, most people dont get it. This isnt regular pain, its nerve pain. It has a mind of its own.

God bless Mouse for suggesting mindfulness meditation...although im not there totally yet...one thing stuck out in the mindfulness CD...in this life everyone experiences pain, but suffering is optional. I will try doing that more!

Anyways...I hav ebeen on Amitriptyline...but honestly either its not working anymore or works on and off...hard to tell.

Whatever.

Take care girl!

Noni

Hey hon!

I'm so glad you found us as well. Mostly we have a similar story - a series of Drs who have no bloody idea! Of course vulvodynia means pain in your girl bits so not really a diagnosis if you're lucky enough to get one!

I think a pain clinic is a really good option. Managing the pain is essential.

I'm keen on lifestyle changes as well. Be kind to yourself. Try to get rid of sugar, coffee ... sorry alcohol. Quality sleep is good if you can get it. Relaxing baths if you can. Meditation and therapy are my favourite things. I see a sex therapist (OH MY!!!) she has a few clients with V. Managing all of this is hard work so unloading all your crap is a good idea.

Thanks for the blessing Noni - right back at you

Welcome to the forum, nice to have another Sydney girl here.

Welcome Lisa there is a vast amount of knowledge from the Ladies on this forum.


Ria

Hi there - i am only very new here but got diagnosed with VV ( at 26) years ago after suffering from it since I was a young child. Anyway - I am also from Australia and was wondering if you have been put in touch with Dr Marek Jantos? He is a leading expert in Vulvodynia, based in Adelaide but has clinics in most capital cities ( including Sydney). His diagnosis and then treatment improved my VV by about 80% using biofeedback and dilators ( giving birth improved it the other 15%). Anyway - if you are interested let me know and I can give you his details or you can Google it. Checkout his website www.vulvodynia.com.au or jsut google his name.

I also saw Marek and his treatment has also improved my pain by about 80% highly respect this man for his knowledge and understanding. I am still aiming for 100% though!!

Hi, welcome to the group!

I'm from perth & found this group one night last year when all my V problems started,which was pretty much the same way as yours did. The ladies here are wonderful you should join the private fb group as well, just to let you know my v has improved immensley after numerous dr appt, gyno appts, different creams & physio I found I had to stop using creams (ami etc) altogether as it was only making my situation worse! however everyone is different but change of diet & if you can lighten your stresses somehow (easier said than done when your stressed out in pain, I know) does help...

We are all here for you...
xxx

Thanks everyone so much for the ideas and support-it makes everything a little bit easier. I have been trying madly to quit sugar, but I've always been a sugar fiend and with not much in the way of distraction it's been a bit of a fail. I have managed to cut out alcohol and coffee, mostly, but I think that was easier as I've had very little social life in the past year! Reading stories of people actually getting better is really great, so thanks again for sharing!