[lafemelle]

Amelillo, I've had a normal pH this whole time as well, which is one other thing that's had me confused. Other than that, my symptoms really do match the overall description of DIV.

Sarah, I've wondered about my biopsy results also...the doctor who did the biopsy was just a regular OB/GYN. The dermatologist I saw recently--who is a specialist, but in dermatology--has a copy of my records from the other doctor's office, so she was able to look at the info on my biopsy. But what I don't know is what specific information she relayed to the specialists at the vulvar clinic at OHSU (the ones she phoned, who "diagnosed" the VVS). I have seriously wanted to know this whole time what they specifically looked for in the biopsy results and what they wrote down in my file as far as what those results were. Initially, they diagnosed me with the VIN based on the biopsy. But the weird thing is, when the Aldara treatment (for the VIN) didn't work, that same doctor backtracked and put me on a corticosteroid cream, as if it was LS or LP. So I seriously wonder if she was taking me seriously and taking all things into consideration, or if she was just throwing stuff at me because she didn't want to do extensive research on my problems.

By the way, didn't mean to scare you about the biopsy! The mistake I made was that I didn't take pain reliever beforehand...if I had done that, it wouldn't have been as bad. So that's my advice, especially if you have strong painkillers!

[heather123]

I am literally sitting here crying thanking god that there are other women out there with these problems other than me. Ever since 2008, I have been getting some sort of weird infection on and off. I get an almost fishy smelling, white discharge, internal itching and burning, and pain in my cervix during sex. Ive had ultrasounds done, culltures done, and tested for STDs. Evrything is always negative and normal. Even so, they prescribed me metronidazole and diflucan for 2 weeks just to make sure. The metronidazole gave me thrush and i also got a UTI at the same time. Im such a mess. Nothing is working for me. I take acidophillis pills and eat yogert all day up the butt. I have pinpointed my abdominal pain towards the colon side all the way up the fornix past the cervix. It feels like an almost badly bruised pain. I keep doing to doctors spending money on co pays and nothing is working and im told im fine. I DONT FEEL FINE. IDK what to do. I was diagnosed with HPV 2 years ago around the time this all started happening but they keep telling me its not related. I have low grade dysplasia that is monitored every 6 months so far no change. MY whole reproductive systom is going haywire and i feel so unhealthy because of it. I just want to be normal im only 21!

[Sarah001]

lafemelle I think I would try to get to see a dermatologist who specialises in the vulvar, that's the type I'm seeing in August as the GU consultant who referred me said a normal dermatologist wouldn't know enough about vulvar issues to be of use. If you see one that specialises in female problems they may read your notes totally different to others and spot what the issue is right away. It certainly sounds alot like either DIV or one of the Lichens from what you've said. As you also said a doctor diagnosing VVS without actually seeing you can't be right, especially when your biopsy revealed something. I think that needs further investigation.

Heather what kind of doctors have you seen so far?

[heather123]

ive been to two different gynos now. I get a burning feeling everytime i sit, its so annoying. I stopped having sex because of the pain in my pelvis. They thought i had a mild form of pelvic inflammatory disease but they keep telling me i have no infection. They said the next step is to look inside my uterus with a camera and then after that look at my abdomen. I imagine if i had any cyst or fibriot or tumor it would show on the ultrasounds. I imagine if it was a colon problem (since trhe pain is on that side) but i have no constipation or diahrrea. My periods are regular also. IDK

[lafemelle]

Sarah, the dermatologist I'm seeing does specialize in vulvar issues, that's why I was referred to her. But the thing is...as helpful as she's trying to be (she really is determined to help me beat this, which is new to me since most doctors brush it off and tell me they give up), she's also the one who was trying to tell me I needed cryosurgery for my VIN, and that that would cure me. Turns out for VIN1, you're not supposed to do anything treatment-wise, especially not with surgery, because that can cause damage and make things worse. So even though she's a specialist with vulvar skin conditions, she still doesn't seem to be 100% informed on vulvar issues and that makes me weary of trusting she's going about this the right way.

Other than that, I've only seen regular gynecologists. I've been told by two doctors now to go to OHSU's vulvar clinic in person, but it's not covered by my insurance and I don't have the money to travel there anyway, so I'm kind of stuck.

[Sarah001]

That's a shame, you'd think a vulvar specialist would know all these things. I'm baffled then, I had a brief flicker of hope there for a while that at least one of us could find a solution. The GU consultant who referred me to the dermatologist has also said if I don't get any solutions from the dermatology appointment the next step is a vulvar clinic but it's hours away from where I live and my joints seriously restrict my travelling so I really don't know if that's an option for me either.

[lafemelle]

Yeah, I hear you...the closest vulvar clinic to me is 8 hours away, which is why it's not really a possibility for me to go there. That's why I'm constantly on message boards like this, is because I'm hoping if someone else out there in my shoes (because SO many other women are going through the same thing we are) is able to find an answer that may lead me and other ladies in the right direction...

[amelillo13]

Bah. I had an appointment scheduled for the 24th to see my specialist, but for some reason I'm spotting even though I'm not supposed to have my period until the very end of the month.

Has this 'infection' messed up anyone's cycle, or is it just me? I swear I get my period every two weeks. Really annoying. I suppose it could be unrelated and just be stress or something.

[Sarah001]

My periods have got alot closer together too, I feel like I'm always expecting one. I'm supposed to see a doctor on the 24th and I'm worried I'll get my period before then too because it's due any day. My periods always used to be 35-40 days apart from day one to day one and now I'm lucky if I get 26 days. This is why I think hormones are worth testing, it's got to be hormone related when you have a change of cycle.

[lafemelle]

Since I was on birth control up until December, I really couldn't tell you whether or not it screwed up my cycle. Although, after I quit birth control it took over 5 months for my period to come back when it should typically only take a max of 3.