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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


My story (prev and now)

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My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 2:05 pm

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

xmandi88x

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Post  Alana3 on Mon Apr 22, 2013 3:03 pm

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!

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Re: My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 3:14 pm

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

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Post  Sarah001 on Mon Apr 22, 2013 5:26 pm

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.
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Re: My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 7:48 pm

i have vestibular migraines. x

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Post  Alana3 on Mon Apr 22, 2013 8:45 pm

what are vestibular migraines?

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Post  xmandi88x on Wed Apr 24, 2013 9:11 am

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

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Post  Alana3 on Wed Apr 24, 2013 3:00 pm

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.

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Post  xmandi88x on Thu Apr 25, 2013 7:06 am

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.

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Post  Alana3 on Thu Apr 25, 2013 10:45 am

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

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Post  keepdreaming on Fri Apr 26, 2013 8:24 am

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!

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