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» Did going off antidepressants cause this?
Today at 2:08 am by ryn207

» 7 months since the diagnosis
Yesterday at 11:43 pm by agtoronto

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
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» Can you guys tell me your experiences with diflucan/Fluconazole?
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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 1

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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


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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