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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
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» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
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» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

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, …

Comments: 9

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 …

Comments: 5

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 …

Comments: 0

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


Vuvlodynia and onset

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Vuvlodynia and onset

Post  bjs156 on Wed Dec 26, 2012 10:19 pm

Hi all, new to this as well and not quite sure if im posting in the write way! But anyway, have suffered from this horrible thing for over a yr and a half, started with a new sexual partner. The thing is a had a huge reaction which all doctors and gyno thought was thrush or bacteria vaganosis, both negative. To this day i still believe i have a different discharge and smell, yet everything appears normal! Is the discharge a case for anyone else? yet a day doesnt go by where my vuvla is itchy sore burning etc.

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Re: Vuvlodynia and onset

Post  Kathye10 on Thu Feb 21, 2013 4:50 am

You may have a different type of bacteria/yeast that they didn't pick up on a normal vaginal culture. I don't know if you are still suffering (I saw your post was from last year) but call your insurance company and ask if they cover a bacterial DNA probe. It will show EVERYTHING. I wasn't showing anything on a normal culture but tested positive for 3 different types of bacteria on the DNA probe. It took 5 Dr's before one of them offered me the test. Just make sure your insurance covers it because it costs about $3,000. I still don't know how much of it my insurance covers but regardless I was glad to finally find out. Good luck!!
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Re: Vuvlodynia and onset

Post  raquelll on Thu Feb 21, 2013 8:52 am

What kind of stuff do they show on a DNA probe? Would this be useful for someone who has a lot of discharge? In my mind there is something "off" about the smell and texture of it, yet I never have bacteria or yeast either. Perhaps this is something I should ask for...

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Re: Vuvlodynia and onset

Post  jen007 on Fri Feb 22, 2013 2:13 am

I always had a lot of discharge and chronic yeast infections back when I first discovered my vulvodynia. I had a thick paste like discharge, usually white and when I had the yeast or was starting to get yeasty it would smell. One thing that helps is keeping the area clean. Not to say you ladies aren't clean, just to be even more clean than usual. Now I only use unscented ivory soap on my private areas and I use the target brand, up & up, woman's sanitary wipes. They haven't given me a problem and they smell good and keep me fresh all day. Another thing too, 100% cotton underwear! It keeps moisture away which keeps the yeast away. After doing all those things I noticed a big difference!

-Jen

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Re: Vuvlodynia and onset

Post  raquelll on Sun Feb 24, 2013 6:24 am

Is it still possible that there is yeast that is causing odor if I keep getting tested by my gynecologist for yeast and there's nothing? Even she thought there would be some yeast but then when she tested, she said there was none!

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Re: Vuvlodynia and onset

Post  Kathye10 on Sun Feb 24, 2013 7:36 am

Hi raquelll,

The DNA probe shows anything and everything possible as far as both yeast and bacteria goes. I think the regular culture shows things like candida albicans (regular yeast) gardenella (BV), group b strep, and maybe 1 or 2 others. The DNA probe shows like 5 or 6 different kinds of yeast and 10-15 types of bacteria. When I got the paperwork back, I was amazed at how many things could be living up there affraid

So to answer your last question, I'd say IF you have some form or yeast or bacteria that is not showing up on a normal culture, YES, that could be the reason for the discharge and odor. Have you tried probiotics or eating yogurt?
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Re: Vuvlodynia and onset

Post  carby148 on Mon Feb 25, 2013 6:35 am

I've always felt I've had different discharge than the average woman, although I'll never really know for sure unless I go asking or look at other women's discharge, which obviously won't be happening.

I've always had daily discharge, enough to have to change pantiliners about twice a day. I've recently had to stop wearing them as I think they contribute to my chronic yeast infections and vulva pain, but I've worn one every day since high school (I'm 26 now).

It's a burden really, because I feel like I'm constantly wiping or walking around with wet underwear. I can't imagine that's normal, as I've never met another woman who has had to deal with it like I have, unless they are just too embarrassed to talk about it.

I don't know if the odor I have down there is normal, although everyone says if it's not foul smelling, it probably is. My husband doesn't seem to mind it, so I'm assuming it's a normal vagina smell.

When my pap smears or cultures don't come up positive for any type of infection, the doctors don't say anything of concern, so I'm assuming I'm "normal," but I still think the amount of discharge I produce is abnormal.
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Re: Vuvlodynia and onset

Post  raquelll on Mon Feb 25, 2013 6:46 am

Yes, that is how I feel about the discharge! I've just given up wearing pantiliners or anything like that and have wet underwear all the time. Also, stained underwear. And yeah, nobody has ever complained about the smell or anything, but I personally am pretty sure it's not normal, even if a gynecologist has never really said anything about it. UGH vulvodynia mysteries...

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Re: Vuvlodynia and onset

Post  carby148 on Mon Feb 25, 2013 5:49 pm

raquelll wrote:Yes, that is how I feel about the discharge! I've just given up wearing pantiliners or anything like that and have wet underwear all the time. Also, stained underwear. And yeah, nobody has ever complained about the smell or anything, but I personally am pretty sure it's not normal, even if a gynecologist has never really said anything about it. UGH vulvodynia mysteries...

I feel ya. I've looked up "normal vaginal odor" and most sites say a "musky" smell, but like, what the heck does "musk" smell like?

I know for me, part of the unfavorable odor is my natural odor and sweat, so I notice a more normal smell after showering. I also blow dry my vagina after showers instead of using towels, which reduces the moisture down there and reducing the risk of bacteria from the towels.
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Re: Vuvlodynia and onset

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