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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


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.


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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...

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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.

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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.

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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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