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» It feels like I’m going to have pain forever
Mon Jul 16, 2018 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 10:01 am by dunkelma

» It feels like I’m going to have pain forever
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» Honey decreased my pain considerably!
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» Birth control pills can cause vestibulitis
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» Gabapentin gel and pregnancy
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» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

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: 1

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: 9

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: 1

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: 5

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

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0


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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