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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» 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
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

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 …

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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 …

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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?

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Vulvodynia?

Post  Casscass09 on Fri May 20, 2016 2:34 pm

Hello,
This is gonna be a long story, sorry. So more than a year ago when I first became sexually active I gotta uti, and bacterial vaginitis. I got the uti to go away. But it took many courses of antibiotics the bv to go away. When it finally went away, I was still left with a symptom and that was it burning while I was peeling. After seeing my urologist many times she told me she thinks it's borderline IC. I never got any tests done for that because at the time she gave me pyridum to help with the burning. And for some reason after taking that my symptoms went away. Fast forward about 2 months and I'm still symptom free with the burning. But then I try to have sex again and it triggers my painful urination. But I noticed even before seeing a urologist for IC I had pain while having sex. It's hard to explain but when I'm having sex it feels like the walls of my vagina are being like scraped. They hurt. I don't know if that made sense but yeah. When I went to the gynecologist she took a look around and she told me the muscles of the opening of my vagina were very vey tight. And that made me think maybe it was pelvic floor dysfunction. But now that I'm looking up symptoms it's seems like it could be vulvoadyna. It hurt even when she swabbed the inside with a q-tip. The only time I hurt is when something is in my vagina. I sometimes get really itchy around the opening of my vagina. But that's like once every week. Maybe even less. Does anyone think it could be vulvoadyna? I've also got some weird discharge going one and I've gotten many tests done and have come back negative. I'm thinking that the antibiotics ruined all the good bacteria down there and that's what caused all this.

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 4:56 pm

Welcome Casscass09 and thanks for sharing your story.
What you're telling, let me think of provoked V or vestibulitis. This would not exclude the diagnosis you've got. Hope, you'll soon find out. Maybe you ask your gyn whether that could be a possibility.
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Antaea

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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:00 pm

I'm sure the ladies on this forum are going to get sick of me writing this, but I want to make sure women understand what a vulvodynia diagnosis means. I really wish someone would have told me this earlier on so I knew there was hope for relief regardless of all the dismissive doctors I saw throwing around a vague vulvodynia diagnosis.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why. Some women have a nerve issue, some have pelvic floor dysfunction, some have undiagnosed inflammatory conditions, some have unidentified soap/detergent reactions, etc..

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who treats women with only certain types of vulvar pain. He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV) - if you are interested in what my test results showed to result in this diagnosis, let me know as I am happy to share them. My inflammation is not caused by an infection but is left over from too many antibiotics and multiple irritating treatments after an infection (a longer version of my story is linked in my signature). My issue is not nerve related or caused by unresolved sexual issues as the other vulvar specialists I've seen have insisted.

The only reason I'm telling you all this is to hopefully give you encouragement to keep searching for answers, and in my opinion, being told I had vulvodynia wasn't good enough for me since it didn't tell me what was actually wrong (just the opposite really - just a fancy medical term for an unexplained pain). Below are some suggestions and probing questions to hopefully head you in the right direction (some are obvious, but I have to include them just in case):

- Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), not 100% cotton tampons/pads (I use a UK brand of organic 100% cotton tampons called TOTM - ordered from Amazon), douches, etc.

- If you are having sex, your partner MUST use hypoallergenic products also. Afterall, your partner's skin is coming into contact with you. So any chemical residues on their skin can rub off on you. It can take weeks to months for your skin to calm down. So give this a fair shot before writing it off.

- Did your doctor tell you what your vaginal pH is, or do you monitor it yourself? A higher pH doesn't necessarily mean an infection, but it could be a sign of low good bacteria, especially since you were on antibiotics. For me, my lactobacillus count is low (even though my PH is normal), and probiotics and pH balancing products were not enough to restore healthy flora.

- You mentioned you have discharge. Does it have a color or smell? Does your pain seem worse when it comes into contact with your vulva? Does it stick to your skin or ruin your underwear?

I hope this helps you a little to get to the bottom of your pain! As a wonderful lady on this forum (PainBlogger) once said "'Chronic' does not necessarily mean 'permanent'...Stubbornness pays with this condition. Be stubborn and don't give up hope."

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 5:13 pm

This is very important information which should be repeatet from time to time.
THANK YOU.
But personal, the diagnosis "vulvodynia" did not parrot something I already had guessed. It opens up to a special treatment which is not possible without. I mean drugs like Lyrica and other medication for neuropathic pain, even this is only one type of vulvodynia.
Another thought: Women who are pre-og postmenopausal, should think of measuring their estrogen-levels. Often too low levels and atrophy of the skin may cause generalized vulvodynia in women after the menopause. Topical estrogen may also be helpful for women suffring from provoked vestibulitis.
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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:25 pm

You are absolutely correct Smile If the pain is truly nerve related, a diagnosis of vulvodynia will open up other treatment options with drugs like anticonvulsants and antidepressants.

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Re: Vulvodynia?

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