Vaginal dermatitis or not?

[lilsmitty]

I have a vaginal infection. I have had this problem for approx 20 years.  A nurse diagnosed me about 11 years ago and prescribed a topical .05% cream i put on it. I never had to apply the cream twice. It always worked the first time.
the symptoms are: severe itching. My labia cracks open and my mucous membrane is raw.  I have to get in the shower to urinate.
The stinging is unbearable.
It is not dermatitis. it is not lichen, it is not anything normally listed under female gynological problems. I lost the cream in a move. I have tried to get my records from my insurance who I no longer have, and they have been archived.
Can someone help me? it is ruining my life. it seems to me that the topical ointment was a steroid of somekind. I found it once on a Rx company website. its nothing normally prescribed for any female problems. Trust me I have tried the ALL.  
The nurse wsa the only person that ever helped me with this.  She took one look and told me what it was and prescribed the cream. I was so happy I cried. Now, I am back to square one.  
Help please, if someone knows what I have let me know. Also from what I remember, it's something I would have to live with for the rest of my life, but it was controlled by the cream she gave me. She told me when I had a slight problem, put it on. or if I felt it coming on with the itching, use the cream. She was right on.

[girlwithlupus]

I came hoping to find a little info here and I can't believe  what I've just read. I am pretty darn sure this is what is wrong with me. I see my doc on wed's and I am really glad I came here first . Thank you, everyone for your knowledge.Wow, I already have Lupus, now possible this... Well, I guess what's one more autoimmune disease . My doctor is really going to get an ear full...lol

[trac777]

I wanted to tell you the reason I don't have an offical Behcet's Syndrome diagnosis yet is because I have yet to have any serious organ damage documented, which can actually be really hard to do. Not everyone has to wait as long as I have been waiting. A lot of the time small damage from tissue and blood vessel inflammation can not be seen by any tests. Often, surgery is required for them to find vasculitis. That is how they found vasculitis in me during surgery looking for endometriosis. If it wasn't for that I wouldn't still be waiting to start treatment. I am lucky because my symptoms have not been as serious as some, but it has also been a big problem because I have been suffering greatly and not gotten the help I needed many times. Most of my symptoms cannot be seen and it's been very hard to prove that something is wrong.  I have had to fight back against people thinking this was all in my mind. I have had to find a medical cause for my symptoms on my own and a lot of time was wasted because it came on over a long period of time. Only one of the hundreds of doctors I've seen had ever even heard of Behcet's Syndrome, he was a GI doctor. They do not look for it. One doctor, my Rheumatologist, told me he didn't even believe it existed. This disease is very real. It's treated all over the world, but most American doctors no nothing about it. They do not know the symptoms or how to treat it. They rely on old information and still think it only happens to people in the middle east even though research has shown it happens because something has damaged the immune system and not because of your genes. It does not run in families and it is not always a text book case. You would think it would show up on MRI's, but often with Behcet't it's the very smallest blood vessels involved, and those don't show up most of the time. It takes a big incident for them to see it and prove that you have it . American doctors don't want to be liable for treating anything until they have enough medical proof to be sure that you require the treatment. It is not easy to get that far. For us, it is more important to get the treatment before something bad happens, not afterwards. I have all the symptoms and I am being treated with immune suppressants and I have had several doctors diagnosis my symptoms as Behcet's Syndrome, but with this disease the ultimate decision is up to the Rheumatologist. My rheumatologist says it shouldn't matter if I have an official diagnosis as long as it is being treated. He says he is more concerned right now that I will lose my ability to qualify for insurance once I have a diagnosis. One thing to look for as far as tests are concern would be a a slighly high white blood cell count...your nerophils mainly, but others white cells also. It could mean just that you aren't feeling well at the time to have it be a little high, but if you can gather your records and show that you have an on going problem with a high white blood cell count, that would be a first step in showing your doctors something is not normal.

One more thing....I've seen over twenty GYN's as well as other doctors and I did my own research on the possible causes for the inflammation and for the cuts some people with Behcet's Syndrome get. I can tell you from what I have learned  that these symptoms are not caused by any type of HPV. They also would not be caused by Herpes 1 in people with no other apparent serious health problems like HIV. Bacterial Vaginosis and Yeast Infections may cause inflammation and small cracks in the folds of the skin, they do not cause cuts in center areas of the skin, and they heal without reoccurance once the infection is treated. An anal fissure can sometimes occur in the center area of the pernium (between the front and back) because of straining or constipation. Unless you have developed more than one cut at a time at some point, or have developed cuts in different areas of the genitals other than the pernium, a pernium cut may just be a fissure. An anal fissure would be a single cut that keeps happening in the same place over and over again on in the center of the pernium. An anal fissure is caused by repeatedly tearing open the thin skin in that area from straining. Not like the small cuts that just happen for no reason the way they happen with the Herpes Simplex Virus and Behcet's Syndrome. I have one cut the comes back over and over again on my pernium area, but I also get cuts in other areas from time to time aswell along with severe inflammation. All of my hormone levels are normal. Those are the only things I've found that could be the possible causes for these symptoms. Just having the inflammation is a symptom, not everyone get's the little cuts. Not everyone get's full blown Behcet's either. If you take good care of yourself, you can do really well.

[trac777]

An autoimmune disease called Behcet's Syndrome's initial symptoms closely resemble the herpes virus, causing vaginal sores, cuts, fissures, folliculitis and or inflammation in the genital area. Other symptoms develop many years later. I believe that many of you have this illness at varied degrees. It is different in everyone who has it. Your body is basically allergicly reacting to things around you. Your immune system is in over drive, it is an autoimmune disorder caused by enviromental damage to your immune system. It can not be fixed. It could get better or worse, depending on how well you take care of yourselves and how well you are treated.

. My symptoms started at age fifteen with itching, inflammation, then folliculitis (ingrown hairs), then cuts all over from time to time. It is different for everyone who has it. Some people just have inflammation where others may get cuts, or sores aswell. Folliculitis is a type of acne and is very common in Behcet's and occurs during or before a "flare" and can be on the face or anywhere. Chronic yeast infections and BV come hand and hand with Behcet's because it is a immune system disorder that weakens the immune system because the immune system is working in over drive. You are now allergic to more things. It is not contagious and it doesn't run in families. Researchers around the world think it is triggered by strep throat or from other enviromental causes, which permanitally damaged the immune system. It has been proven to not be genetic. Gential to Gential contact will cause a reaction "flare" in these people, so will a common illness, injury, or stress. It is very important for people who have this to rest often, use condoms, and take good care of themselves to avoid flares. They will also need medication like steriods and or immune suppressants, depending on their case.  Someone who needs a lot of medication to start, might not need that much with a little time. Common symptoms later in the disease, if it goes untreated, are digestive symptoms, bowel inflammation, possible bladder inflammation that feels like a bladder infection, arthritis, fibromyalga, and very late in the disease serious eye inflammation and possibly central nervous system involvement. People rarely die from this illness, the main thing a person has to be worried about is quality of life. That why you want to be proactive, not scared. This disease can be managed if properly treated.

For about ten years I had the gential symptoms and was sure it was herpes and never mentioned it to my doctors again. None of the medication for herpes had ever helped me and I also noticed my husband never got sick from me. The inflammation was the worst and I was using hydrocortisone on my own by then for some relief.

I started having other symptoms like irritable bowel syndrome and fatigue. Then after I had two children my symptoms got a lot worse. FIbromyalga, Interstitial Cystitis, Epi-scleritis (inflammation of the small blood vessels in my eyes), and things like that. My immune system was attacking my body. It took years before I had enough symptoms and saw enough doctors to start getting it treated. They are still not totally sure what is wrong with me. There is a lot of misconceptions about these things because they are thought to be rare. The truth is that they are just highly under treated in the United States. They think I have something called Behcet's Syndrome, the world's oldest known disease. It is an autoimmune disease that can be very mild or more severe. It is hard to tell what it is unless you are able to get enough of the symptoms well documented and you have just the right symptoms even though your symptoms might be totally different than everyone else's symptoms. The stress in your life plays a big role in how bad your flares will be.

There are no tests that can tell if you have Behcet's. It is based on symptoms only. Vaginal symptoms that look like herpes (herpes causes inflammation, cuts, or sores), canker sores in the mouth at least three times per year, and inflammation in the blood vessels in the eyes. It can take years for enough of the symptoms to show up and they usually don't show up at the same time. You really need to fight for answers. Go to the American Behcet's Association for more information, but remember when you are there, those are the worst cases, most people with Behcet's don't have it that severe and do well with treatment.

[drivingmemental]

i have had the same condition for about 15yrs and lately it has become so bad it is unbearable. i was prescribed a cortisone cream 'Elocon' 0.1% and lately it hasn't been helping as much as it seemed to. i am aware that your body gets used to medications over time and also cortisone shouldn't be used for long periods. If anyone can suggest anything i would greatly appreciate it. I have been to a couple of GP's over the years and felt humiliated each time. All they could suggest was "wash in chamonile tea" "wear cotton underwear or none at all" "reduce caffiene and any preservatives from diet" which i tried but without any change to the condition. the Elocon cream tended to reduce the symptons for a few days but it would flare up again. In desparation i have tried my children's itch cream Eurax cream  which helped a little but doesn't last long. i scratch in my sleep and wake up with lacerations so bad that i can hardly pee or walk properly the next day. sometimes the itching is so bad in the middle of the nigth that it wakes me up. I haven't been able to have sex for months either. I want to get a referral to a dermatologist but am worried i will be humiliated, treated like i have some weird disease or treated for thrush, or told to just bath in tea! Does anyone know if this has a name?

[twinkle97]

I have had a similar problem for about a year and a half.  Although my  symtoms are not as severe as some have described, it's really starting to get to me.  I've been prescribed numerous steroid creams, the last being dermovate.  None worked.  Two weeks ago I got some herbal liquid from a chinese herbal doctor which most towns have now.  You mix the liquid with water and wash with it.  The symtoms haven't completely gone, however irritation less frequent and the redness has reduced so I'm hopeful that it will do the job eventually as it's the only thing thats made any difference.  It's called JIE ER YIN XI YE.  If you google search then you can get more info.

[heatheraki]

I can really sympathise with the pain you are going through. I've had this condition for four years now and its a living hell.
After becoming allergic to all other prescribed creams, the only thing I'm allowed to put on is dermovate and thats in very limited quantities.
Initially there is some relief but since you are only allowed to put this on once a day it doesn't take long to be in agony again.
If you also suffer from swelling and burning on the inside as I do then you can get some relief from inserting natural yoghurt. The cooling sensation is sheer heaven, especially when its burning so much you dont know what to do with yourself.
I've been on a yeast diet and nickel since I'm allergic to that too... but the flare ups keep coming and I have to say they really get you down.
Sometimes the labia swell to an unbelieavable degree, and when I have that, plus raw, peeling skin its horrendous. So if there is anyone out there who has found anything that can make a difference... please pass it on and help the rest of us get a quality of life back.
I wish that I had an answer for you but you could at least go down the road of using the dermovate. Better than nothing I reckon.