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vaginal sores not herpies
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ourulz06 posted:
I am 24 years old and my husband is my only sexually active partner....EVER. When I was 18 I had open sores in my genital area. My mom took me to the Dr. and they did a herpes culture. (even though I had never been with anyone) It came back negative. Then about a year and a half ago (23yr old) I got really bad strep throat and vaginal sores again. Again I went to the Dr. and all test came back negative. Finally after having a strep again I had some vaginal sores a couple days after. My Dr. put in for a blood test for herpies just to make sure. It came back negative. NOW my husband and I are trying to have a baby. I am 1 week past ovulation and have been sick. Not strep, but more flu like symptoms with fever. My fever has subsided but I can feel the onset of the vaginal sores. I am really worried that this may effect the baby if I am indeed pregnant. Any ideas as to what this may be or if it could be harmful for the baby?
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J_Harrison_Hohner responded:
Dear ourulz: If all your herpes test have returned negative (even the one before you were ever sexually active) then the search has to be widened to more unusual conditions. The following are some POSSIBLE, and uncommon causes of your vaginal sores:

1. Behcet's Syndrome or Behcet's Disease. Here is an overview of this:

www.niams.nih.gov/Health_Info/Behcets_Disease/behcets_disease_ff.asp

2. Vulvar eczema. This can be present on the vulva (so can psoriasis), but neither of these usually go up inside the vaginal canal.

3. Lichen planus. Here is a good overview but it focuses on sores in the mouth (where it is easier to see and diagnose) rather than the sores that can occur just inside the vaginal opening:

www.nlm.nih.gov/medlineplus/ency/article/000867.htm

I would urge you to see a dermatologist when the sores are present. A dermatologist can diagnose any of the three conditions mentioned above. As far as I am aware none of these uncommon conditions are a problem in early pregnancy, but you would need a more "for sure" diagnosis. Lastly, the correlation between illness and the appearance of the sores suggests there might be an immune system component. All of these three mentioned above are connected to autoimmune disorders.

Yours, Jane
 
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ourulz06 responded:
Thank you so much for your suggestions! I have a Gyno. appt. set for Monday so hopfully my sores will be in peek for an informing culture.

Your suggestions have been helpful as I have been researching. Of the possible causes you mentioned, Behcet's Syndrome is the only one that looks simular to my sores. It has never appreared as a rash nor has it ever been ichy. They really do look like oral sores (canker sores)

Growing up I always had a really bad time with canker sores but seemed to grow out of it. I have also recently had some digestive track issues assumed to be my galbladder (sludge and galstones) but also found fluid around my liver evidence of swelling. But nothing came about because they couldn't "catch" it in action, so I have just changed my eating habits.

I related the sores with illness on the 3rd occurance and it is helpful to know some questions to ask at the dr. I had never thought of an autoimmune disorder.

Thank you again, ourulz
 
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Jbrad246 replied to ourulz06's response:
ourulz06,
Did you ever get a diagnosis for this condition? I have a very similar issue. I had a fever and then a vaginal sore when I was 12 and had never had sex. They tested me for herpes and it came back negative. Then again when I was 17 I had group C strep throat and ended up getting vaginal sores again (I was still a virgin at this point) I took an antibiotic for strep throat and that cured the vaginal sores as well. Now, just recently (age 22) I had a really bad fever and have a vaginal sore again. I kind of had a sore throat as well so I had a strep test done but that came back negative for group A strep. I don't have the results for group C strep yet. I have a history of canker sores as well. I don't know what to think about all of this and am nervous. Thank you
 
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An_249653 replied to Jbrad246's response:
Alright girls...it sounds like we have all had similar issues and it is comforting to know I am not the only one going through this. I had my first vaginal break out when I was 12 years old. Obviously not sexually active at the time- I went to the doctor and they ran some tests and everything came back negative. I didn't have another break out until I was 23 years old. I am now experiencing my 5th break out. Every time I get them I have a virus for at least 2-3 days and then they come. I have seen my gyn and she recommended me to a Rhuematologist. I have also had stomach issues my whole life and mouth ulcers as well. They "think " it could be behcets but there is really no way to know. You basically just treat the symptoms. I have also been tested at least 4 times for herpies and every time it comes back negative. I have had a colonoscopy to rule out any other stomach issues and everything was negative. So, in a nutshell- you pretty much have to play the rule out game, which stinks. It is very frustrating to not have answers and not sure we ever will. My last visit to my Rhuematologist, she had several girls in their 20s going through the same thing. Very weird not knowing, just know that you are not alone and that hopefully one day we will have some answers. If you ever have any questions, you can always contact me.

Thanks!
 
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menabowls responded:
have this too! i've read some of the comments on this and everyone who seems to be experiencing this has been linked to strep. I've always been easily seceptable to strep. When i first experienced this living hell in my genital area i had flu like symptoms.
 
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menabowls replied to Jbrad246's response:
were you unable to walk when you had these sores? Because I definitley was not able to AT ALL. my herpes tests came back negative, wtf is going on??!
 
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JessLynne07 responded:
Did anyone get a conclusive diagnosis? I had this happen 3 times a few years ago and it is happening again. I was tested for TONS and haven't gotten anything!
 
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An_252272 responded:
Did anyone on this thread get a diagnosis? I've had the exact same problem and also tested negative for herpes. The doctors keep saying it's herpes even though all the blood test for 1 and 2 are negative.

What other tests have you ladies had? What should I be asking my doctor to do since they seem incapable of figuring it out themselves?
 
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mssddj responded:
This just happened to my daughter. She had stomach-flu symptoms and the sores appeared. She was very frustrated because none of the doctors believed she wasn't sexually active yet.

There is no test to confirm or refute the diagnosis, but the pictures and description are the same as what she has. The doctor called it Ahpthous Ulcers - more common in the mouth than vaginal.

The OB/GYN said in 35 years of practice he had only seen 5 cases. He did say it can recur. He gave her Clobetasaol Propionate (topical cream) and Prednisone.

Good luck - this sucks.
 
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inneedofhelp2013 replied to An_252272's response:

I have been hospitalized 5 times since I was 18 with these ulcers. I have been tested for EVERYTHING when I say it I mean it! I have seen the top specialists in the country, all of them are baffled, they have never seen this before, they aren't sure if it's a rheumtological problem, infectious disease, obgyn or dermo. I am going to list my symptoms, allergies and everything else. Please respond if you have similar symptoms, and so on- I would really like a cure and some way to prevent these debilitating ulcers from EVER happening again.

I used to start off with strep through or some sort of upper respiratory infection, then I would get a high fever and the ulcers (that looked like craters) would come out. I later found out I had Epstein Barr active and I was really tired and fatigued, same symptoms of mono. This happened also during situations of high stress, mid-terms, finals and so on. I never once had mouth ulcers, eye ulcer's, arthritis, joint pain, a weird rash, or rash on my fingers or inbetween my toes, my nailbeds after examined under a microscope seam normal (if you had any of the following symptoms, then you have a known disease, just follow up with your doctor specifying those symptoms).

It's been about four years since my last episode, UNTIL September and now November I had had two episodes. I know I was fatigued because when I had blood work done my ANA levels were high. However unlike my previous episodes, I never had strep or a high fever beforehand but yes I was under two high stress situations when the ulcers came out. I was hospitalized for the last week and now I am determined to find a cure!

I recently was diagnosed with Celiac disease the gluten allergy (which is an auto immune disease). I had an endoscopy and only the biopsies tested positive, not the blood work which I believe only 20% don't show via blood work.

[a name=_MailAutoSig>Please share your stories if they are similar, but again ONLY vaginal ulcers. Yes I have been tested for ever STD, bischetes, lupus, chrones, the list goes on"026If this is of any difference since a lot of these diseases seem to be based on ethnicity and backgrounds- I am of Russian/ Polish decent, I am Jewish, white and in my late 20's.

Please write back"026..
 
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neelyrose replied to inneedofhelp2013's response:
My daughter started this December over a year ago at 12 years old, never been sexually active. She started with an upper respiratory like virus and fever then a couple of days into the sickness developed the large crater puss filled open lesions. It was absolutely horrible. She was in excruciating pain and the only way she could urinate was in a tub of water and screaming pain! This all lasted a total of 3-4 weeks because after the lesions healed she was left with extreme fatigue. Then it happened that following May with no cold symptoms just fever and backache. The lesions were just as bad if not worse because this time her bottom swelled so big it hung almost inside out. And again the extreme fatigue followed causing her to miss her last 3 weeks of school before summer break. The next episode was this past Christmas Day. She began with only fever and back aches. Then the lesions came. However, this time her Dr. immediately started her on prednisone and it helped within a day and it never escalated. She then started this again 2 weeks ago. This time, like the very first episode, it began with upper respiratory symptoms, then 2/3 days later an ulcer/lesion appeared which we then immediately began the steroid pack. That being said, like everyone else, although never having sex, they did every STD test and of course all was negative. As her mother, this has been, well, I don't even have words to describe the hurt and desperation and sheer panic I feel at the onset of these episodes. I am desperate for an answer and how to help my daughter in any way from getting this again. We have been to rheumatologists, gyn, homeopathic, you name it, to try to find answers. If ANYONE knows anyone that could lead us in another direction it would be very much appreciated. No doctor seems to have an answer or has never seen it at all. We have been told it probably is apathus ulcers. This is so emotionally and physically traumatizing for my daughter and for our family. She has to miss so much school and due to the nature of the problem and how mean middle schoolers can be she can not tell the true reason for missing so much.
 
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neelyrose replied to An_249653's response:
My daughter started this December over a year ago at 12 years old, never been sexually active. She started with an upper respiratory like virus and fever then a couple of days into the sickness developed the large crater puss filled open lesions. It was absolutely horrible. She was in excruciating pain and the only way she could urinate was in a tub of water and screaming pain! This all lasted a total of 3-4 weeks because after the lesions healed she was left with extreme fatigue. Then it happened that following May with no cold symptoms just fever and backache. The lesions were just as bad if not worse because this time her bottom swelled so big it hung almost inside out. And again the extreme fatigue followed causing her to miss her last 3 weeks of school before summer break. The next episode was this past Christmas Day. She began with only fever and back aches. Then the lesions came. However, this time her Dr. immediately started her on prednisone and it helped within a day and it never escalated. She then started this again 2 weeks ago. This time, like the very first episode, it began with upper respiratory symptoms, then 2/3 days later an ulcer/lesion appeared which we then immediately began the steroid pack. That being said, like everyone else, although never having sex, they did every STD test and of course all was negative. As her mother, this has been, well, I don't even have words to describe the hurt and desperation and sheer panic I feel at the onset of these episodes. I am desperate for an answer and how to help my daughter in any way from getting this again. We have been to rheumatologists, gyn, homeopathic, you name it, to try to find answers. If ANYONE knows anyone that could lead us in another direction it would be very much appreciated. No doctor seems to have an answer or has never seen it at all. E have been told it is This is so emotionally and physically traumatizing for my daughter and for our family. She has to miss so much school and due to the nature of the problem and how mean middle schoolers can be she can not tell the true reason for missing so much. Also, I wonder about yeast or Candida. I know that a build up in one's system can cause all kinds of issues. Has anyone here ever heard that something of that nature could possibly cause this? Just a thought.
 
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sbree25g replied to neelyrose's response:
I have had some similar symptoms usually right befor i catch a cold or some virus type of issue. So i suggest that you keep your daughter`s immune system boosted. Like take a multi vitamin and eat a healthy diet. Limit bread and sugars. I also soaked in epsom salt and peroxide baths. That help ease the pain and draw out the infection. They have since slowed the frequency and severity. And garlic supplements are a great natural anti biotic. God bless
 
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southflgrl replied to sbree25g's response:
I too suffer from these, and like a lot of you I had bad mouth canker sores when I was younger, then seemed to outgrow them, then started getting these vaginal ulcers in my 20's then they seemed to go dormant for a long time but have reared its most painful existence again these last couple years and they either come right before my period or right after being sick like I'm having right now. I had a upper respiratory infection last week and this week I have the worse case of this I have ever had. The pain is incredible. I too have been tested for all.the common issues such as STD, etc..and all negative. I think this is a lot more common than the Dr's realize yet no-one can give a definitive diagnosis. I am 41 years old and having to deal with this still it is maddening. Please keep posting if anyone can shed some light on this.


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