[r3dh3ad]

Have any of you ladies been diagnosed with pinworms? I know it sounds a liitle weird but I just replied to Bobbiejoe's post and she has had a 2 month yeast infection and was dx with pinworms. I have read before that the infestation can cause vaginal issues but never thought too much about it. It is very common and you don't always experience the intense nocturnal anal itching. But it could explain why so many of us have normal ph, negative cultures, stds and so forth. I don't know- I'm grasping at straws nowadays- but I thought I would put it out there just the same.

[lafemelle]

lafemelle I think you said you were diagnosed with VVS didn't you? Have you tried the pelvic floor retraining for it? I'm going to book in and see a women's health physio to get my pelvic floor assessed and treated, apparently it can cause all kinds of symptoms if it's not working properly and discharge is actually one of them amazingly. As for the tablets you take they can up the dose a bit and see if it helps then if you ask them to, different people respond to different doses so that might be worth a try?

I was diagnosed with VVS by someone who's never done an exam on me personally, who only diagnosed me with it because they weren't sure what else it could be. Scary thing is, this was a specialist at one of the supposed best vulvar clinics in the US. AAAAAAAA!

r3dh3ad, the pinworms thing is very interesting, I'll have to look into that a little more!

And I've been reading through the V book as well but it's overwhelming because my symptoms still match about 8 different possible things that I've tried treatment for, and I'm still sitting here without an answer.

Have any of you ladies (amelillo, I think you may have but I can't remember) been given hydrocortisone suppositories to use? I've tried a steroid cream externally but no one's ever considered giving me something to put inside my vagina to see if it helps (other than boric acid). I'm trying to decide if I should ask my doctor about it at my next appointment.

[Sarah001]

I got all excited about the pinworms idea then found they cause severe itching wherever they infect so that's a definite no for me as I don't have any itching at all!

There was a thread on here not long ago where someone said they used hydrocortisone foam vaginally but only on the advice of a doctor and I can't remember what it was to actually treat. It wasn't long ago though, sorry I can't be more precise!

[r3dh3ad]

Well some sites I have visited relay that you may not experience the itch. I don't understand myself how something like that wouldn't make you itch but it's going on my list for my next doctor appt. I don't relly experience itch just vulvar redness and minor swelling which I am sure is is brought on my this nasty discharge that never goes away.
I do believe I tried hydrocortisone cream but as the cream and not a suppository. As I remember it worked for one whole day. Then symptoms back full force the next. I would be glad to try it again as a suppository, though just becuase you never know- so I am also adding that to my list. I f you do a search on here for hydrocortisone or maybe desquamative vaginitis it may bring up the post. I think the woman that posted it was loosely diagnosed with desquamative vaginitis if I remember correctly.

[r3dh3ad]

Lafamelle - Would you mind listing some of the possibilities you've read about in the V book for me?

[amelillo13]

I've considered the pinworm thing too, but think it is highly unlikely, at least in my case. It is pretty rare as it is, but I think by now a doctor would have been able to tell, or you would have been able to tell if you looked at, well...other things when using the restroom.

I have tried hydrocortisone vaginally. I was put on it for about 2-3 months I think. It was a nightmare! It made everything worse and it made me super paranoid about being around anyone that was sick, especially since it was during the winter.

I think there is no reason for a doctor to really prescribe it for internal use like that unless they are certain it is something like DIV. Compromising your immune system, especially for a long period of time is just not a good idea. Turns out after the 2-3 month course my doctor decided it couldn't have been DIV since it made it worse instead of helping it. However, reading through all these books and what not, it still seems like a very real possibility since one of its main characteristics is excessive white blood cells, which I have in my discharge. Who knows.

[Sarah001]

I've been trying to get a copy of the V Book but I don't think it was available here in the UK when I last looked. There's a book by Howard Glazer about living with vulvodynia that I keep considering too as that broad heading covers alot of problems.

I've wondered about DIV too but I think it's a condition diagnosed by biopsy so for now I'm just having to wait until I go to dermatology in August. I'm kind of expecting dermatology to reveal nothing except "non specific inflammation" however.

I thought there would be alot of other women in this thread too considering this is actually a really common problem to have with a variety of causes, from looking online I've noticed there are literally thousands of women with these issues and no resolutions listed but I keep thinking some of them must have recovered surely!

[lafemelle]

I've wondered about DIV too but I think it's a condition diagnosed by biopsy so for now I'm just having to wait until I go to dermatology in August.

Sarah, do you happen to know if they have to look for specific things in a tissue sample to determine it's DIV, or is it one of those things they just take one look and determine that's the problem? I've had a biopsy done, where they found VIN, but I've been convinced for about a year now that DIV is behind all of my symptoms. I've also had a problem with lots of white blood cells showing up during exams, but the cultures have always shown nothing infectious so that's always confused me. But the doctor who performed the biopsy never said anything about DIV (or lichen planus, which is a relative of DIV and which I'm also unsure has been properly checked for in my case), and not all doctors know about DIV so I'm wondering if there's a chance it could have been missed during my biopsy...

I'd just hate to have to go through it again, it was excruciatingly painful and cost a lot of money...

[amelillo13]

Sarah, do you happen to know if they have to look for specific things in a tissue sample to determine it's DIV, or is it one of those things they just take one look and determine that's the problem? I've had a biopsy done, where they found VIN, but I've been convinced for about a year now that DIV is behind all of my symptoms. I've also had a problem with lots of white blood cells showing up during exams, but the cultures have always shown nothing infectious so that's always confused me. But the doctor who performed the biopsy never said anything about DIV (or lichen planus, which is a relative of DIV and which I'm also unsure has been properly checked for in my case), and not all doctors know about DIV so I'm wondering if there's a chance it could have been missed during my biopsy...

I'd just hate to have to go through it again, it was excruciatingly painful and cost a lot of money...

DIV is not diagnosed through a biopsy. Things like LP and LC would be and there have kinda sorta been some links seen between DIV and LP, but not enough to fully say they are absolutely related. The more common thought it that it may be caused by a bacteria not yet discovered. DIV becomes a consideration when everything else is ruled out. There is no 'test' for it per se, because they do not know what causes it.' It's just one of those things, unfortunately that has no real explanation yet, though I know gynecologists have been studying it a lot more recently, trying to understand it. The specialist I see goes to a lot of conferences around the world, and has been telling me DIV has been brought up a lot, so it is at least on the forefront of the issues they discuss.

The main symptoms are profuse discharge (puslike, or yellow-green; though if it is yellow-green it could also be something like Trich) white blood cells+ parabasal cells with lack of lactobacilli on wet mounts, pain with sex, inflammation, pH above 4.5 (my pH has been normal throughout this whole ordeal which is weird) sometimes burning and itching,. Usually clindamycin and or hydrocortisone are supposed to help, though it is usually takes a long course of treatment. There is no guarantee that any sort of medication or steroidal cream would help since they don't know what causes it to begin with.

Once you've been treated with other meds for other conditions and they don't help or work, then a doctor usually suggests it may be something like this; though I'm not sure being told that you have something that they have no idea how to cure is any better than being a mystery case to begin with.

[Sarah001]

My apologies lafamelle I was going on what someone else told me on another forum about biopsy being used to diagnose DIV however I've just read a few bits about it (I don't think I'm allowed to post links here or I would) and it can cause chronic irritation with a yellow discharge and can be triggered by low estrogen so I would definitely push for the hormone tests we mentioned earlier in the thread.

The VIN1 result you got has played on my mind also, I looked into biopsies when I got told I'd need one and found that VIN1 is another of those irritating umbrella terms they throw at us women and covers the lichen problems etc as you said and I know I've come across Lichen Planus listing a heavy yellow discharge as one of the usual symptoms so I think I'd be inclined to go down that route to figure out precisely what the VIN1 test result they gave you is. A few sites actually say they no longer use the VIN diagnosis method because it's vague. Can I ask who did the biopsy? Was it a vulvar specialist? Is it possible they still have your results and that perhaps more is on them than what they told you?

Please please don't tell me how painful a biopsy is again!! I'm already anxious about mine and it's still about 6 weeks away, on the day I'm going to be petrified and plan to dope myself up on my strong painkillers I use for my joint problems!!