My story (prev and now)

Hi there,

When i was 21 i suffered with Vulvodynia, Basically my vagina was so sore and burning, my thighs and also my bum cheeks and just under them would also be very sore and would burn, i would get a gel type discharge and then every so often i would spot a little bit of blood but this would be more pinkish then when you had your period and also would from time to time get a brown discarge. i went to doctors who didnt know what was up so referred me to the gyno's. It was them who told me i had Vulvodynia and was perscribed Amitriptyline. over thext 2 years i upped my dose and reached 70mg. I changed alot of things like no perfumed shampoo / conditioner / body scrubs etc i only ever wore cotton underwear and soft clothing that wouldnt irritate my body. Within time i became cured and didnt suffer with it for nearly 2 years however the past week and half it has all come back again. I became ill last year and am currently suffering with another condition which is quite rare so not sure if the medication im on for it has triggered it or whether its just because my body is so run down. Im due back at docs tomorrow to see if i can be referred back to gyno or to get the amitriptyline back but i do know that this medication im on at the moment may not be suitable with ami. Does anyone have any tips on how to help with the burning. I am currently off work at the moment due to the other illness i have but cant believe i now i have this on top it too. I could tell something was wrong with my body over the last couple of weeks as i was feeling pins and needles, burning arms, funny feelings in my body, joints ached and the gel type discharge again (very clear discharge).

Please note that you can get better as i did im just annoyed its come back when i thought that aspect was completely in the past. x

Get some lidocaine from your doctor it will burn when putting it on, but it quickly numbs it. You can also get a compound of that amitryptaline (sp) and gabapentin mixed with lidocaine assuming you're in the states. You could try a warm bath with nothing in it, if anything that will relax you. What worked for me was PT she taught me how to do exercises to relieve muscle tension. Other than that it sucks!

i use lidocaine already but try and use it sparingly as its only a little tube. im in the uk so not sure if i can get the cream but im at docs tomorrow see if i can be referred back to gyno. x

Can I ask what the other rare condition is? You don't have to say if you don't want to I just wondered if it might be connected.

i have vestibular migraines. x

what are vestibular migraines?

I have dizziness, off balance, feeling like I'm moving but I'm still, funny vision like bouncy and strained, sore eyes, headaches, neck pains, fatigue etc and then now this. X

Isn't that a migraine? I have that stuff too, it sucks, if it is migraines, can they do botox for you? I was considering it. There's also a supplement from vitamin shoppe I just started taking and it works called Migrerelief, I believe. If I'm misunderstanding something though disregard.

It is a migraine a vestibular migraine but not as easy to treat there is no cure over the counter meds shouldn't be taken for too long I've had this illness for over a year taking over the counter meds too much can actually cause re bound headaches I'm on preventative medication but it depends on the person and if it works for them I've only been on it 8 weeks so early days yet.

Never heard of that hope luck I hope it works for you

Hi There

I was diagnosed with Provoked vestibulodynia two months ago but having it for a bit more than a year. The curious thing about your post is that I also have vestibular migraines but I've been having them for at least 7 years, some of the doctors I've seen think that there's a link between my Vestibular migraines and my vulvodynia, something to do with the nerves sensitization.

For the burning try lidocaine.

I hope it gets better!