[Sarah001]

I saw the Vulvar Dermatologist at the beginning of the week and she was so bad! She looked at my red raw skin and said it was completely normal, really??! Then said it was vulvodynia and told me to drastically up the dose of the Amitriptyline I take for my joints (5 times the dose I'm already on and woozy) which I'll be able to do to a degree but probably not as high as she wants. She gave me a letter to give to my GP for lidocaine ointment which I'm in no rush to get and when I said I hadn't read anything positive about vulvodynia online she said "take no notice of what you see online most of it's written by crazy people". Yes, those were her words!! She knew nothing about biofeedback treatment and looked blank when I said I'd started it which really surprised me as she's not only a vulvar specialist but teaches other doctors about the issue too so no wonder I can't get much help! I'm supposed to be seeing her again in 2 months but frankly if I hadn't already started the biofeedback treatment I would have come out of there feeling hopeless and depressed. So I'm still no closer to getting oestrogen cream to try even though it was on my notes as a suggestion from the GU consultant who referred me. I really hope the biofeedback works, I hate being reliant on useless doctors.

I'm pleased you got temporary relief Lafemelle, it must show that that's the way to go?

r3dh3ad I know oestrogen cream doesn't work for everyone, I'm moaning about not being able to get it and it probably wouldn't work for me if I did! I'm the same and stupidly raise my hopes only to get disappointed time and time again. What do you plan to try now?

[r3dh3ad]

Sarah- Your vulvar specialist sounds a lot like the gyn 'specialist' they sent me to! Quite frankly I feel as though I am more informed having visited this website and others I've read on line than what any other professional has done for me. As far as any other treatments go or where to got from here-I DON'T KNOW! I am at a loss for now but I'm not feeling as hopeless and depressed as I was before. I am still going to keep my eyes and ears open and definitely keep an open mind regarding home remedies-What else can I do? Anyway Sarah Have you been tested for pelvic congestion syndrome? I had an ultrasound done ( actually two ) They ruled it out though. Just curious-

[ItsASecret]

she said "take no notice of what you see online most of it's written by crazy people".

It is unfortunate but true. A huge amount of online material is written by people who's main focus is to make it seem like the field of medicine is out to kill everyone. The problem is trying to find reliable places...most of those reliable places come from journal article sites and university medical websites (and the sites that they refer to). It is tough to find the good products too, as again most of the online stuff is fake made by basement shops looking to make a quick buck.

A Naturopath could know about the bio-feedback stuff so you can try to find a professional around you but make sure it is by someone who went to school for the material and not someone just opening up shop who again is looking to make a quick buck.

[Sarah001]

r3dh3ad no I haven't been tested for pelvic congestion, I suspect I'd struggle to get a referral for that! There's a good chance this all ties in with my Hypermobility Syndrome though as I'm affected the worst in the pelvic joints so the joints could be irritating nerves as they move too far etc. I'm just going to stick to the biofeedback for now and see how that goes along with some natural ointments on the skin.

[lafemelle]

Well, I called my doctor back today--apparently she'd wanted to see me 2 weeks into my treatment as a follow-up, yet she never told me that so that was annoying to hear. Anyway, she's having me do one more 2-week round of hydrocortisone suppositories and then I see her again in a month. In the meantime, she's sending me to have blood work done because she's wondering about a vitamin D deficiency. I am getting so tired of this never-ending process. Am I the only one who can't imagine a day--EVER--where I will feel normal again?

[Sarah001]

Nope you're certainly not alone feeling like that lafemelle. I'm low on vitamin D and take a supplement for it but it hasn't altered my symptoms one bit sadly. We all seem to be going round in circles, I mean how hard is it for these doctors? So many women suffer from symptoms like ours with no answers why don't they start doing a bit more research and figure out why.

[ItsASecret]

So many women suffer from symptoms like ours with no answers why don't they start doing a bit more research and figure out why.

Because all women are different and react to every single medication or treatment therapy in a different way. They are tired of it too because just like you say so many women suffer with these symptoms but there is never going to be an end-all-cure-all so they are forced to try a bunch of stuff that may not work because medical options have been exhausted.

[lafemelle]

Nope you're certainly not alone feeling like that lafemelle. I'm low on vitamin D and take a supplement for it but it hasn't altered my symptoms one bit sadly. We all seem to be going round in circles, I mean how hard is it for these doctors? So many women suffer from symptoms like ours with no answers why don't they start doing a bit more research and figure out why.

Well, and what really upsets me is that I found something that helped and when I called to say that, I was told to wait a month and to try something ELSE. It's as if my saying, "This treatment plan actually did some good" went in one ear and out the other.

[amelillo13]

Hey ladies. I kind of recall someone mentioning this, but I can't find it in the thread. Have any of you tried taking a bunch of folic acid? Someone on another forum I post on said that is what finally cured it for her after battling BV for 4 years. I'm thinking about running this by my doctor since I know you can OD on just about anything. I know my multivitamin contains some folic acid, but it also contains Vitamin D and clearly wasn't doing anything for me since I was/may still be deficient. Anyway, I'm not quite sure why it would impact anything, but just throwing it out there.

[Sarah001]

Yes I tried the 800mg of folic acid a day that I saw mentioned on another site and it didn't make any difference to me at all, I used it for about 2 months before I gave up on that one but I have seen several women mention it online. The RDA of folic acid is half that I believe and my multi vit contains 100% so the 800mg is twice the RDA, or at least it is going on UK figures! I've tried all manner of supplements, Flaxseed oil, Grapeseed Extract, Vit D, B complex, Olive Leaf Extract and none of them have helped me one bit but that doesn't mean they won't work for others.