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Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

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Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

Comments: 1

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 …

Comments: 0

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

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 …

Comments: 5

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 …

Comments: 0

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Vulvodynia burning mouth and bladder discomfort

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Vulvodynia burning mouth and bladder discomfort

Post  Annmaria on Sat Oct 15, 2016 12:35 am

I have been diagnosed with vulvodynia and I also have burning mouth pain at the same time. I was convinced I must have herpes simplex but I have exhaustively tested negative for this including having a western blot test which is the gold standard test for herpes simplex.
Now I just don't know what to do and would love to hear from anyone who might be able to advise... Is there anyone out there who has experienced burning mouth and vulvodynia together and if so did you find anything to help relieve the discomfort of the mouth?
I also find with the V symptoms I get a full bladder feeling... it isn't cystitis but is uncomfortable... any advice on dealing with this also?
I've given up on trying to get any medical support and I have been asked by doctors if I suffer health anxiety... no one seems to understand that this is real!
I just want one pain free day but suspect that this just isn't going to happen
I'm 57 and so post menopausal

Thanks very much

Annmaria

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Re: Vulvodynia burning mouth and bladder discomfort

Post  PainBlogger on Sat Oct 15, 2016 10:21 am

With regards to the bladder symptoms I'd suggest (if you're not already doing this) cutting out: caffeine, alcohol, carbonated drinks, artificial sweeteners, and citrus fruits/juice. Decaffeinated tea/coffee is best avoided too as it's still acidic and can irritate. I still have some caffeine because I do eat chocolate, but by cutting out the above and switching to redbush tea or peppermint tea as my hot drinks I noticed a lot less urge to empty my bladder when I didn't really need to. I don't limit my fluids - in fact, I drink about 10-12 large mugs of (redbush/peppermint) tea per day plus plain water. When I empty my bladder now it is generally pretty full and I empty 6-7 times a day, which is normal.

I can't offer any advice on the burning mouth issue. I don't get that thankfully.

I hope you get some relief soon.


PainBlogger

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Re: Vulvodynia burning mouth and bladder discomfort

Post  Annmaria on Sat Oct 15, 2016 11:47 am

Thank you so much!

I do drink redbush as it's the closest to thinking you are drinking tea and I make a lot of teas from herbs I grow. Is the bladder thing a common symptom? I am so confused with this partly because of the mouth symptoms ( which now I think about it probably started first) I really struggle with not understanding why I have got this which is why I assumed I must have had herpes simplex .

I think some of this for me is learning to not overthink things and if I could just get one symptom under control it would be a relief!

Thanks again

Annmaria

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Re: Vulvodynia burning mouth and bladder discomfort

Post  PainBlogger on Tue Oct 18, 2016 4:33 pm

A lot of women with vulvodynia also have some bladder involvement. It's not surprisingly really given how close together everything is down there.

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Re: Vulvodynia burning mouth and bladder discomfort

Post  Alana3 on Wed Oct 19, 2016 8:02 pm

Check out IC. Thar could result in bladder pain...

Alana3

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To Annmaria

Post  Tilly56 on Wed Nov 30, 2016 9:55 am

hi, you sound similar to me I'm 56 menopausal. As regards bladder, I always show blood on urinalysis strip, suffer dys vulvo. Are there anyways that help you, Lyrica helps me.

Tilly56

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Re: Vulvodynia burning mouth and bladder discomfort

Post  Eliza123 on Fri Dec 02, 2016 2:39 am

I used to have burning tongue and mouth....thought it would never go away. This was before I got vulvadynia. It did go away but I wonder if the burning is somehow related. I also got atrial fibrillation in between! It's been a tough couple of years.

Eliza123

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Re: Vulvodynia burning mouth and bladder discomfort

Post  Annmaria on Sun Dec 04, 2016 9:21 pm

Hi Eliza
Sounds as though you have had a tough time! I think the Vulvodynia started a little before the burning mouth for me but the mouth burning is what really gets to me. I have recently had some days where it has been OK and then it comes back. It doesn't seem as bad now though. I was wondering however: How long did you have it for and did you find you got some days without it once it started to go away?
I have some medication from the doctor but I've been coping better using meditation and trying to reduce stress by not obsessing over it !
I do think there must be a connection between the two conditions but I don't come across many people who experience it!
Thank you for your reply


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Re: Vulvodynia burning mouth and bladder discomfort

Post  Zbrown on Fri Nov 10, 2017 7:26 pm

Yeah I have both aswell sorry I know this is a old post but yeah I do feel as if it's stress sometimes but I don't know the burning mouth pain is so annoying it comes and goes I can't pin point a trigger if I'm honest xx

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Re: Vulvodynia burning mouth and bladder discomfort

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