my story from a san diego girl

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

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

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

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

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

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

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