[lafemelle]

Amelillo, I just received an interesting call from my doctor and thought I'd check in with you and see if you have any updates. The dermatological specialist who had been concerned HPV was causing my problems took the time to consult with some doctors at the vulvar clinic at OHSU--where they see mystery cases like you and me every day. Since you appear to have literally the same symptoms as me, I thought I'd see if any of your doctors have ever brought up vulvar vestibulitis syndrome? My doctor went through all of my records from the past 2 years with the specialists at the vulvar clinic, and they told her that if they were treating me they would treat me for VVS. It's a form of vulvodynia apparently, and it causes symptoms that are very similar to infections--pretty much the only way to diagnose it is to completely rule out any yeast or bacterial infection, which my doctors have done and it sounds like yours have as well. I've been given Amitriptyline and Lidocaine to see if they help with my symptoms any, but I haven't really started the treatment yet so I don't know yet if it will do anything for me.

Anyway, just wondering if your doctors ever suggested this to you? In over 2 years of seeing doctors this is the first I've ever even HEARD of vulvar vestibulitis, so now I'm going crazy researching it to see what I can learn about it.

[Sarah001]

That's exactly what my pelvic floor suggestion relates to, I suspect vulvar vestibulitis is what I'll be diagnosed with after I've seen the dermatologist as I don't think mine is going to turn out to be a skin condition either. If you want information about VVS try searching for Dr Howard Glazer and read some of his studies on the subject, he basically says women with VVS have a higher than normal resting tone of the pelvic floor but very weak contractions with no endurance and concludes these are weak pelvic floor muscles in spasm. I've also trawled the internet for more advice and I'm attempting to lower my oxalate consumption as well as take calcium citrate as a first course of action although I doubt that will make alot of difference as I don't eat much in the way of high oxalate food and drink anyway but it's worth a try.

There's alot of negative information online about VVS but you do find some positive bits if you look.

[amelillo13]

That's exactly what my pelvic floor suggestion relates to, I suspect vulvar vestibulitis is what I'll be diagnosed with after I've seen the dermatologist as I don't think mine is going to turn out to be a skin condition either. If you want information about VVS try searching for Dr Howard Glazer and read some of his studies on the subject, he basically says women with VVS have a higher than normal resting tone of the pelvic floor but very weak contractions with no endurance and concludes these are weak pelvic floor muscles in spasm. I've also trawled the internet for more advice and I'm attempting to lower my oxalate consumption as well as take calcium citrate as a first course of action although I doubt that will make alot of difference as I don't eat much in the way of high oxalate food and drink anyway but it's worth a try.

There's alot of negative information online about VVS but you do find some positive bits if you look.

Hey Sarah,

Thanks for all of the suggestions. As far as the pelvic floor spasm thing, I had that checked out early last year. Uncomfortable way they test that, but he said everything seemed to be working normally. The specialist I've been seeing for over a year now works at a vulvar disorder clinic and he immediately did that test and tested for vulvovydnia or however that is spelled, because upon hearing my symptoms, that's what he thought it was. After examining me, he said it wasn't. He used some stuff to like stain the inside of me and see if anything turned color or something. I don't remember exactly. I've been on a round of steroids for a couple weeks or a month when he thought it was DIV, can't remember exactly how long it was, but it only made my problem worse. Since this doc does work at a vulvar disorder clinic specifically, I would think if it is anything related to that out of the norm, he would have thought of it, but I'll mention it any way when I see him again.

At this point it is time to start from scratch and re-test and re-assess me as it is. I'm not convinced this is a bacterial/yeast problem just because I have been on like 15 different antibiotics and nothing ever grows out on cultures. But it also doesn't make much sense that it wouldn't be since it either started b/c of bacteria with a UTI I had a while back, or my flora is still out of what due to the Cipro I was on for that UTI cuz that is some strong medicine. It's so frustrating that nothing helps! I take acidophilus strains that are supposed to help the vaginal flora, I eat yogurt, use hypoallergenic soaps, cotton underwear, etc., I've tried douching with vinegar and water (doctor suggested) and nothing gives me any relief. I just had some bloodwork done to make sure that everything in my body is working properly, so I'll be waiting on those results for a week or two, not like I expect them to show anything that can relate to this...but never know, I guess.

I think I'm also going to go back to the Doctor that told me I had cervicitis and proceeded to do 2 cryosurgeries back in early 09. I was stupid and didn't get a second opinion at the time and just did it. All the doctors I've seen since say my cervix looks fine, and I think that Dr. may have been full of and/or misdiagnosed me, BUT I'd like to think what he says it is now after all that and a year has passed since the last cryo.

[lafemelle]

That's exactly what my pelvic floor suggestion relates to, I suspect vulvar vestibulitis is what I'll be diagnosed with after I've seen the dermatologist as I don't think mine is going to turn out to be a skin condition either. If you want information about VVS try searching for Dr Howard Glazer and read some of his studies on the subject, he basically says women with VVS have a higher than normal resting tone of the pelvic floor but very weak contractions with no endurance and concludes these are weak pelvic floor muscles in spasm. I've also trawled the internet for more advice and I'm attempting to lower my oxalate consumption as well as take calcium citrate as a first course of action although I doubt that will make alot of difference as I don't eat much in the way of high oxalate food and drink anyway but it's worth a try.

There's alot of negative information online about VVS but you do find some positive bits if you look.

The only thing that makes me uneasy with my recent "diagnosis" is that I also have a yellowish discharge that is often severely heavy, and VVS usually doesn't create excess discharge. This is the one and only thing that's frustrating me, is that NONE of the doctors I've seen (which have been several) seem to acknowledge my discharge issue--they all focus on the burning and irritation aspect, and when I mention the discharge I swear it goes in one ear and out the other.

I can't believe how frustrating this is for us ladies. I'm in the process of starting up a blog that outlines what I've been through and will outline what I've gone through, just so I can keep a record of everything and hopefully be able to share my experience with other women going through the same thing. It's amazing how my optimism and pessimism about this fluctuate day to day. At this point I'm ready to scream my lungs out over it.

[Sarah001]

lafemelle, I've just googled the term "vular vestibulitis yellow discharge" and there's a load of websites that come up with that as a possible symptom. It just got me curious and I find searching for specific terms the best way to answer my questions! I've also just visited your blog and will keep returning to see how you get on, wishing you good health soon!

[lafemelle]

Sarah, I'm surprised to hear that because I've googled that exact phrase what feels like a million times and although I get lots of results, when I click on the links the "yellow discharge" portion of the site is usually in an article about BV or and STD and the portions about VVS only mention the pain and irritation. Maybe I'm just not looking thoroughly enough, I have to admit I've been skimming for information most of the time. What confuses me, then, is how the discharge would be cleared up, because neither the amitriptyline nor the lidocaine is designed for that purpose.

[amelillo13]

Random question; perhaps someone will be able to explain it to me.

Last year in August/September I'd say, I had blood drawn to check my IgE levels. A doctor suggested this to see if my body was having an allergic reaction to something that could be causing this discharge and irritation. It came back normal. From what I've read on the internet, the IgE level should have been able to determine if I was having an auto-immune response to something...so, since it didn't....does that mean that I have no infection at all? If it wasn't an allergy, wouldn't it still be positive if I had BV? I mean, my discharge is full of WBC and it seems to me if the body is producing these and attacking the bad bacteria or itself, then it would have showed in that blood test?

I'm not sure how it works honestly, so I am wondering if I am understanding it correctly. Would the blood test be negative because it's a problem located in the vaginal only, and not my whole body or something?

Gah. I've had a terrible last two days for some reason. Lots of pelvic pain, lots of discharge. Very, very frustrated right now. I have no idea what made it worse the past few days. I ate some cheese sticks, maybe it was the cheese? =/ I don't see my gyno until the 24th and I am going crazy!! I wonder why those who have these mystery diagnosis things going on like me aren't up on the priority list in terms of scheduling an appointment.

[amelillo13]

Also, have either of you ladies (or anyone else reading this thread) tried to insert probiotics vaginally; or inserted yogurt? I take acidophilus pills, but I'm considering inserting it...just not sure about it. Seems like it'd be messy and gross. But heck, if it'd help, I'd do it. I guess I could also make an acidophilus douche which might be less messy, but I think it'd be more helpful at the source for a longer period of time.

[amelillo13]

Ah, . I already asked that on this forum. Sorry, I don't mean to be redundant. I post on so many health message boards now a days I lose track of what I've asked and who I have talked to >.<

[Sarah001]

I've just typed out a really long message but the forum wouldn't post it, it came up with an error, is there a time limit on how long you can spend typing a post out?