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Chronic Vulvar Pain?
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Chronic Vulvar Pain?

Hi !!!
Are there any women in Oregon (Portland metro area, specifically?) who are suffering from Vulvar Vestibulitis (VVS)/chronic vulvar pain?

I suffer from VVS, and am a co-founder of the nonprofit support group National Vulvar Vestibulitis Organization (NVVO).  We have local (Portland Oregon) support group meetings twice a month! Plus we have our website www.nvvo.net and a Yahoo support group. We only have one chapter of NVVO, located here in Portland. (so far!)

If any women out there wanna keep in touch, and/or join our group(s), please let me know and/or visit our sites!

:-)
Thanks!

Julie
NVVO
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Hello. I want to tell you about a health problem you may not be aware of, in hopes that you can make this information available to other people with your health condition. I think it's important to always be aware of all the possibility for any problem you may have, so that you can be confident you are getting the right treatment.

Vulvar Vestibulitis is a chronic inflammatoy disease jjust like interstitial cystitis, inflammatory bowel syndrome, and may other immune system disorders. They are all caused by immune system damage to varing degrees. The name that is placed on your disorder depends on the location your immune system is attacking, how serious the attack is, and sometimes your genes. Everyone's immune system is different and the amount and type of damage is different as well.

I think it's important for woman with this disease to understand how their immune system plays a roll in this inflammation and how similiar the process is to other immune disorders, they all cause inflammation. There is little yet understood about why these things happen, particularly in people who do not have genes that would suggest an inflammatory problem shuld occur.

My concern is that some of your symptoms may progress to a more serious immune disorder without proper treatment and a solid understand of why your immune system needs to be cared for with much attention so that you will stay well.

There is an autoimmune disease called Behcet's Syndrome. It's initial symptoms closely resemble the herpes virus, causing vaginal sores, cuts, fissures, folliculitis and or just inflammation in the genital area. Other symptoms develop many years later. It is different in everyone who has it. Their immune system is in over drive. It is an autoimmune disorder caused by enviromental damage to your immune system.  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 the vagina from time to time. It is different for everyone who has it. Some people just have inflammation where others may get cuts, or even sores. 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. They become  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. It has been proven to not be genetic. Gential (genital) to Gential (genital) 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 (fibromyalgia), 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 (genital) symptoms and was sure it was herpes. My doctors said there was nothing else it could be wvwn though all my cultures came back negative and it was never mentioned it 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 (fibromyalgia), 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.  Behcet's Syndrome is 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.

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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.. 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 would 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.


I wanted to add I have herpes 1. Just about everyone has it. It should not be causing your symptoms unless something is wrong with your immune system. I had the new herpes blood test that showed I have herpes 1 but not herpes 2. We started doing culture after culture of my cuts trying to see if it was herpes 1. I have never had a culture come back positive for anything. It took a long time to prove it, but we have finally established my cuts are not caused by herpes 1. Herpes 1 is much milder than herpes 2 and should not be causing ongoing vaginal symptoms. If it is, it still says something is wrong with your immune system. The white blood cells were the only thing they could find abnormal with my tests. They found them in my blood and in my cultures every time I wasn't feeling good. For years they would say, well that's because you're not feeling well today. Until I gathered 15 years of records showing that I am not feeling well on a regular basis, that was the first clue.


I am determined to tell as many people about this disease as I can. Look around on this message board and you will be floored with how many woman are having these symptoms and have not gotten any real answers from anyone. It is really all about money. This disease pushes doctors out of their comfort zone, it forces them to  work harder than they are use to doing, harder than they want to work. Infact, they have designed a system to help them avoid people like me. They will send us to specialist after specialist making money off your insurance company hoping eventually you will just give up and quit faking it. None of these specialists will actually be willing to do anything special for you. It is the idiology that nothing bad happens to good people. That you just need to toughen up and quit complaining because you look normal and your tests are fine. It would cost a lot of money to treat us, so they ignore it and only treat those who are on deaths door and tell them they couldn't have known what it was because it's so rare. They justify it to themselves by pointing out their hands are full treating the things they do know about. I think it's time we send these doctors back to school and up the patients right to sue them for not knowing more about their job. Why have we allowed them to threaten us? The tell us we won't have enough good doctors if we force them to meet our expectations? Do they think we need them more than they need us? I think if we push, we can have better doctors. I believe any halfway intelligent person would have been able to put together what has been happening to us a long time ago if they were at all interested in finding out.

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One thing I know is woman with Behcet's have a lot of problem's with their periods. Their periods often bring on flares. They can have inflammation in their uterus which leads to extra period cramps and may lead to heavier bleeding.

I mentioned to you that I had surgery looking for endometriosis. I was given many different types of birht control when they thought that was what I had. From talking to other woman with Behcet's and from what I experienced, all of the different birth control medications I took made symptoms a lot worse. I do not know why exactly, but I have not come across any women with Behcet's who did not have some problems with these drugs. I took depro, a lot of woman have problems with that, but I also tried an assortment of different pills that al caused my flares to get really bad. When I would come off of them I got better. The last thing I tried was the Mirena IUD. I would recommend this to other woman, but not to woman with my problem. My GYN didn't realize how inflamed my uterus was, he thought is would help everything get better, and for most woman, I bet it would, but not for me. It was pure agony.  I keep waiting and hoping the pain would go away, that it just needed to settle, but it never did, I had to have it removed. I believe the Nuva Ring, just like the Mirena, has a small amount of hormones in it. This might be the problem, it seems even a little bit of these hormones can trigger a flare. As long as all of your hormone levels are normal you should avoid them at all costs. With Behcet's you are at risk of vascular inflammation which can lead to things like strokes, so horomone suppliments of any kind are a really bad thing for people with this problem.

Don't just let your doctor tell you that you have a hormone problem just because that's what it looks like. Make sure they checked your homone levels. Also, see a dermotologist to make sure your acne is not actually folliculits which looks like teenage acne, but it's not.

A good medication to start with for Behcet's Syndrome would be Colchicrine.
    
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Thank you. Just... thank you. I've been self-diagnosing for years, getting ignored and brushed off by every doctor I meet, even prematurely diagnosed and not allowed to give my full say on my symptoms. I figured out by myself that I had Human Seminal Plasma Hypersensitivity when I was fifteen, a rare allergy. I found out myself that I had Chronic Bladder Infections when I was seventeen. I realized when I was eighteen that my doctors were wrong when they told me that having a fifteen-day menstruation cycle was normal. At nineteen I had my first full-blown flare up, with open sores that were excruciatingly painful. I was told I had herpes, which was devastating until the tests came back negative. They threw five different kinds of antibiotics at me, each time saying "This'll be the one, and then you'll never have to deal with this (Vaginitis-MRSA-???) again." Later that year I went in again to get more antibiotics because I flared up again. I once again was told right off the bat that I had Herpes. I looked my doctor in the eye and said: "No. I do not. Try again." I soon figured out this issue was chronic too. At twenty one I had a flare up with cuts instead of lesions, and I thought it was a separate disorder. This one cleared up on it's own after nearly two weeks. However, having kept medical journals and closely studied my health history and done much research online, I now believe that all these issues and many more which would take too long to list are all related. At least nearly all of them.  Every thing you've said makes perfect sense! Why I was never able to come to this conclusion is astounding, there is so little information on this disease. I applaud you for posting this, and I applaud you for the group you started. Mostly I thank you, I know now that this must be what is wrong with me. I am looking for a new doctor again. My opening line every time I  speak to one from now on will always be:  "Tell me what you know about Behcet's Syndrome."
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