CONSTANT BURNING, ITCHING AND RAW FEELING

[taintedforever]

I have HSV2 and experience constant burning, itching, raw feeling and tiny rashes on my vulva. I have been to several doctors on numerous occassions. I have had cultures done; been tested for all sorts of stds; gotten my hormone levels checked; a biopsy of my labia taken to rule out lichen sclerosis, lichen planus, cancer and etc.. I have been tested for yeast, bv, gonorrhea, trich, chlamydia, ureaplasma, syphillis...you name it. I have been tested for almost everything the doctors can think of. Everything always come back NORMAL/NEGATIVE.  So if my symptoms are not caused by HSV2, then what is it???????? I am so confused and I need answers. I have been suffering in silence.

So, one doctor suggested it may be vulvodynia. The doctor suggested a specialist but he doesnt take insurance and it cost so much to be seen. I do not know what to do because I am starting to think it is Vulvodynia too. Pain with sex; burning pain when my husband ejaculates in me; intense itching; raw feeling inside and out; rash on labia and anus. I DO NOT KNOW WHAT TO DO. DOES ANYONE HAVE ANY SUGGESTIONS????? Thanks.

By the way, Im on 500 mg Valtrex daily...no change in my condition. Thanks.

[seanpaul256]

I would say Herpes has changed something in your body in your genital area. I am actually on here to try get some advice about my own potential herpes symptoms, but ironically I have some medical training. Like most things in the body when you upset the normal balance, you are then changing the body and it becomes open to new problems, ie if you have a weak immune system from one illness, you may pick up others. Tissue in the vagina is complex and the flora/immune ecosystem is also complex. Herpes seems to be a virus that causes far more problems than simple pimples that break through the skin. It is possible that your doctors have found something in your biopsy that appears like a benign condition of say skin irritation, when it fact this could be an outshoot of having herpes - or it could be unrealated. You will never know for sure.

Vulva - is just vulva
Follicular - follice
Keratosis - keratin a protein in skin that can be infected or irritated

Ironically the girl who infected me (without telling me prior) told me afterwards she had no symptoms. When I asked how she knew she had herpes she said she kept getting thrush and found out about her herpes then. It is probable to me at least that her thrush may not even be thrush but burning sensation from herpes. I have no sores just burning, so perhaps her strain of herpes is causing the same burning in me.

Doctors often try to put a name to a symptom rather than say "we dont know". However, dont discount the role of your herpes in your latest condition.

[taintedforever]

UPDATE: Its been over a year since I last been on this site. So, I went to a dermatologist for all the burning, itching vulva skin; had a biopsy, which came back negative. The mid line between my labia minora and labia majora have been splitting and whenever it joins and heals, the skin gets thicker and white in color. Had a vulva colposcopy with vinegar and the skin was very white. The doctor decided to do biopsy of the whitish skin and the normal color skin. I just got a phone call today that the result of my biopsy was Follicular Keratosis, a benign skin condition. I am really confused because I searched the internet and I there is not much information on Follicular Keratosis. Only info I saw was that it usually occurs on skin mostly exposed to the sun. I am so confused. Thank goodness, it came back negative for Lichen Sclerosus. I asked my doctor to request HPV test if it hasn't already been done.

Please! Please! If anyone has any experience or knowledge with Vulva Follicular Keratosis, I would appreciate if would be so kind to share. Thanks again.

My symptoms which led me to see SEVERAL of doctors and specialists are burning, intense itching, paper cuts, tearing, painful sex. I was going crazy. Thought I had vulvodynia, vestibulitis, or herpes related (I do have HSV). So, I guess I can ask more information during my followup appt next to go over punch biopsy results and to look at vulva site. Thanks again.

[gracefromHHP]

urologists are plumbing specialists. If anything, find an urogynecologist to see, not a regular urologist.  You are pretty much wasting your time seeing an urologist for a skin issue.

grace

[taintedforever]

yeah I know but its no harm in trying. I have exhausted all of my resources thus far.

[petal130]

A urologist is not the best choice - their specialty is more internal than external, but it seems like you are limited by your the insurance situation unfortunately. Are you located somewhere where you can seek out another vulva disorder specialist (even if you have to travel an hour or two??) Just a thought. But let us know what the urologist says - no doubt this chronic condition is not an HSV2 issue. Grace will probably have some input here too.

[taintedforever]

Thank you for your responses. Yes, I have been to the dermatologist. She is the one who took a biopsy of my vulva and it came back negative. To Petal130, yes I have tried everything you suggested but nothing seems to work. I have made an appointment with a urologist and hope I can get some answers that way. I would love to see a vulva disease specialist but they do not take insurance and the first visit is over a thousand dollars. I cant afford that at this time unfortunately.

p.s. I wrote a long response but for some reason it did not save. Sigh

[petal130]

While in fact this could very well be vulvodynia, you could consider mistakeguy's advice if your insurance will cover a dermatologist instead.

I have genital herpes as well, and we have a saying on the board "just because you HAVE genital herpes, doesn't mean everything IS herpes related". It's safe to say there's a reason that Valtrex does nothing, as herpes doesn't behave this way.

I can speak from experience as well, that it took me months working with my OB/GYN to figure out what was causing my own chronic soreness/itching/burning. I had intense sensitivities as I found out by eliminating things - soaps, dyes, perfumes, and trying about 10 different panties. I now only use scent/dye free laundry detergent, I only use Cetaphil soap and gently wash, I apply a thin layer of Eucerin Aquaphor (fabulous stuff) daily, I can only wear white 100% cotton panties (and never wear panties to bed), and I cannot use pads, only tampons. The reason I'm sharing this with you is because you'd be amazed at the little things that can make a dramatic difference. You could always try that for starters if you don't have insurance to see a specialist.

[Mistakeguy789]

Have you seen a dermatologist?  Their area is the skin maybe they could shed some light on it.