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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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