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» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

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 …

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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

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: 5

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

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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 …

Comments: 1


my story from a san diego girl

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my story from a san diego girl

Post  Melissa777 on Sun Jul 10, 2011 7:29 pm

I see Dr Willems. Apparently there are maybe only 2 vulvar specialist in SD. Dr Willems is very kind... but he is very stuck on estrogen and steroids... so i want another opinion. I will say the estrogen cream he RX for me is from a pharmacy company- free of propolyn glycols- etc: It is soothing when applied,and sometimes i feel it works, sometimes im unsure. anyhow im going to see dr michael Kyrchman http://thesexualhealthcenter.com/dr-krychman/ and from what Im hearing, he is wonderful... I will see soon- in the beginning of august. You see my case is not complicated per say because its not severe but whats complicated is figuring out what caused it. and having so many opinions from so many different doctors is so confusing. Some say it could be yeast some say its an allergy to things such as yeast and molds (being i tested positive for these) some say its the boric acid that caused it... its pretty confusing I do know I once suffered from this (but not this way) in 2002-2004 I had a heavy over growth of group b strep (which i no longer have thanks to fem-dophilus) treated it many times with anti biotics but back then i never had redness around the opening of my vagina i simply just had pain on the left side thats it and it finally went away when i started taking fem-dophilus- i never had burning or itching or soreness on the outer lips like i sometimes do now. Dr willems is convinced i had dermatitis down there and thats what caused this... but really here is what happened in august 2010 started dating a new guy... never had intercourse, just once oral sex- i did immediately feel itching after it was over(never felt that before with oral sex) and i went and rinsed off it went away- around the same time i was highly stressed with my old job and barely sleeping.. and 3 weeks later developed the worst yeast infection used a 3 day over the counter clotrimazole- felt better but felt some burning discharge than got diagnosed with BV- tried this stuff called balance active from the UK (bad idea)which inflammed my skin- felt like acid eventually that went away so i decided to do tindamax because i didnt wanna do anything vaginally, did that- took care of BV. Took diflucan every 3 days for about a week and was fine than in december had an itch- other than that i felt ok got diagnosed (or misdiagnosed) from my reg gyn with glabrata yeast (all cultures including gen pap came back NEG for all non albican and albican yeast) but at that time had used boric acid for almost 2 months OUTCH than got dermatitis got prescribed desonide (low dose cortisone) from my derm- helped greatly but now left with this odd on again off again burn sensation once in a while pain, and once in a while itch again all tests for yeast, all bacteria including GBS, staph, ecoli, stds negative so im almost thinking maybe i just have been over treated and this is gonna take a lot of time to heal. yes im def sensitive to products... i cant use rephresh or replense or many vaginal lubs... and even emu oil did not react well to me. nor does coconut oil it wasnt til i left everything alone and started using this estrogen cream that things started to feel better slightly yes this even means only showering once or twice a day rinsing after urination tends to make my dermatitis flare.... because im drying out my skin and i dont have IC so i dont think urination is my issue but the issue that confuses me- is this yeast? allergies? or over treated skin needing to heal... thats why im getting a second opinion. dr willems i will say is great and helps a lot of women, but i think he is pretty straight fwd on his own theory of how to treat women. and estrogen can cause cancer so i try and only use mine once or twice a day for 2-3 days per week rather than every day - have any of you used bust.com/lounge? i love that site its for women- they need a VV page did any of your VV get started from a yeast infection or bacterial? or was it manly hormones? injury? or products?? just curious Melissa


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Re: my story from a san diego girl

Post  naomi on Sun Jul 10, 2011 9:42 pm

heya!

ur symptoms sound pretty similar to mine...completely stuck in a rut!!!

heres my story...can compare notes then http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/660437

xxxxxx
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hi naomi

Post  Melissa777 on Sun Jul 10, 2011 10:20 pm

Hi there! =)
I read your story... it isnt too much like mine. as I only had ONE yeast infection- which cultured pos for yeast
and then a short bout of BV right after treating the yeast infection

My symptoms didnt get to where they are now until after i used boric acid for 1.5 months

Im also not sexually active and am dealing with this.
I dont have the sand paper feel

just some reddness
and off and on itch or burn
i have been tested numerous times for yeast
including one culture that took 30 days to grow
and all NEGATIVE
and this is even when i have not used any antifungals
i dont know the whole thing is a mystery. I even tried dr crandalls theory- it made me worse!

Im now finally somewhat better- but seeing a new well known specialist soon
wish me luck!!!
Melissa


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Re: my story from a san diego girl

Post  Zazu on Mon Jul 11, 2011 1:24 pm

Hi Melissa,

We're all familiar with the story of trying many things to fix the sensations that come with vulvodynia. It took me a long time to move away from thinking that the feelings down there were coming from some sort of infection or skin irritation. Those are the things that we all know about, right - yeast, STIs, allergic rashes, etc.
There are generally three causes of vulvodynia (some people have more than one) - 1. nerve pain 2. muscle pain and 3. hormone-mediated pain. Yours sounds quite likely to be the first one. Bear with me here. What can happen in the vulva is that the body's response to an infection (like yeast, etc.) or a chemical irritation doesn't turn OFF, even when the source of the original problem has gone away. The immune system keeps fighting down there (with 'mast cells'), triggering chronic inflammation, and the growth of too many nerve endings that sense pain. The result is that the nerves are too sensitive and too excited - regular touch can be painful because you have too many nerve endings (even from jeans or bicycle seats), or the nerves can start firing pain signals all on their own. Sometimes the skin turns red, but sometimes you can't even see anything. And of course, all the tests for infections or skin allergens can come back negative!
What can complicate this is that the pelvic floor muscles, triggered by the frequent pain signals from your nerve endings, can seize up. You might not even really notice it, but they can be in a constant state of contraction. You might start to feel weakness or pain in your lower back/hips/groin. Worst part is that this contraction of the muscles can also cause lactic acid build up, which your nerves will interpret as burning (ever had sore muscles that burned after a work out??).
Whether your tight muscles cause your nerves to become overly sensitive and excitable or whether your nerves become highly sensitive (and grow more endings) because of infection/irritation and then trigger tight muscles is different in different women. It's a chicken and egg problem. But it locks your pelvis in a vicious cycle where it doesn't heal from the original problem, and keeps triggering the sensations of burning, itching, aching, tingling, even crawling that women can feel with vulvodynia. Some women only hurt when their vestibule is touched (the area around the opening to the vagina), called vulvar vestibulitis syndrome/provoked vestibulodynia, and some women feel pain all over the vulva, constantly or temporarily, called general vulvodynia.
This is all from two books called "The Vulvodynia Survival Guide" by Dr. Glazer and "When Sex Hurts" by Dr. Goldstein. Sorry this turned into a novel! I just remember the confusion of going from being obsessed with yeast to understanding the nerve pain, and hope that this might help offer an alternative point of view of what might be going on. Hope I got this info all correct, - other ladies jump in please if you notice anything is wrong!!!
Good luck with your new appt!!
Best,
Katie

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thank you =)

Post  Melissa777 on Tue Jul 12, 2011 6:08 pm

thank you for that Katie!
It really helped

BTW- I dont have "pain" its more either a burny-ish type of feel or odd itch
i do get discharge sometimes either clear (normal) or thicker white-
just got a culture but doctor thinks its fine
and im sure i dont have an infection

and your right about becoming obsessed thinking its infection- especially when there are people out there giving false info!

again thank you


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Me too!

Post  grassy on Sat Jul 16, 2011 5:22 pm

Hi there Melissa, me too. I'm cindy. I am the same as you. It all started with a antibiotic sulfa type medicine. That went into a yeast, and the burning never left. I treated mine with clotrimozole and nystatin. Then tons of diflucan. It seems to respond somewhat to the diflucan. What the heck is this? what caused it, the meds, the treatments, the original infection? Every time I get a test its comes back neg. Course i have seen three or more doctors and i cant get any of them to culture or test for yeast. Its extremely frustrating! somedays i see red splotches where it burns, the next day it looks great. I am obsessed with thinking its an infection. But it may not be. cindy

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good news

Post  Melissa777 on Sat Jul 16, 2011 6:46 pm

just wanted to share 1) Im not itching or burning- yay the estrogen cream is working 2) got my yeast culture, bacterial culture, and BV cultures back- all negative NO INFECTION!! yay

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