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Help! What is wrong with me?

Posted , 3 users are following.

sarah71316
sarah71316

Hi. So I have had two outbreaks of what my doctor thought was genital herepes, although I have never had sex, or even my first kiss. My doctor never ran any tests to see if it was herpes, but she gave me acyclovir to treat it. The acyclovir really didn't do much, it still took a full week of agonizing pain for the sores to go away. Ever since my second genital outbreak healed, I have been experiencing almost the same thing, but in my mouth. They are not cold sores, they are in my mouth and on my gums. They look just like canker sores, and I currently have 6 of them. I have never had canker sores before, and I this is starting to concern me. Also, each time before the genital outbreak comes, I get a bad fever. I also experienced joint pain in my hands. My doctor mentioned Bechets disease to me, but said it was almost impossible for me to have it because it is very rare & I don't fit the demographic of people who usually have it. If anyone could help me in figuring out what I have, it would be appreciated.

0 likes, 8 replies

8 Replies

  • margaret22116
    margaret22116 sarah71316

    Posted

    Hi....you almost certainly have Behcet's disease. That is the only thing I know of which causes those kind of genital and mouth ulcers

    I was diagnosed about 11 or 12 years ago. I do not get much of the ulceration but that is a key defining feature of the disease. People are so frequently misdiagnosed with herpes when they have Behcet's by doctors who should know better.

    I am assuming you are in the United States but not sure. Let me know if you are. If so please contact the American Behcet's disease assocition and they will send you an information pack to take to your doctor. But please go see your doctor again and tell her about this. Tell her about the joint pain too. Request a referral to a specialist in that disease. If you let me know where you are I can find the name of someone close to you. Bless you. Awful sotuation to be treated like that. X

  • margaret22116
    margaret22116 sarah71316

    Posted

    Hi....you almost certainly have Behcet's disease. That is the only thing I know of which causes those kind of genital and mouth ulcers

    I was diagnosed about 11 or 12 years ago. I do not get much of the ulceration but that is a key defining feature of the disease. People are so frequently misdiagnosed with herpes when they have Behcet's by doctors who should know better.

    I am assuming you are in the United States but not sure. Let me know if you are. If so please contact the American Behcet's disease assocition and they will send you an information pack to take to your doctor. But please go see your doctor again and tell her about this. Tell her about the joint pain too. Request a referral to a specialist in that disease. If you let me know where you are I can find the name of someone close to you. Bless you. Awful situation to be treated like that. X

  • margaret22116
    margaret22116 sarah71316

    Posted

    Just read your post again. Re Behcet's demographic....I am white British. We do get it. It is not just a Turkish/Japanese disease. I am in touch with a lot of people in the UK United States and Australia who do not fit the demographic. It does affect us but yes...very rare. I guess we are just unlucky. X??

    • sarah71316
      sarah71316 margaret22116

      Posted

      Hi!

      Thank you so much for your help! To reference, I am a young white female living in the US. My doctor said that it would be super unlikely that I would have it because of my age and descent, but my doctor was just a family doctor. She made me feel like I was crazy for thinking I have it! I have currently have an appointment to see my doctor next week, so hopefully we can get things sorted out because these mouth sores are becoming almost unbearable.

    • margaret22116
      margaret22116 sarah71316

      Posted

      Yes we all get this. Even after diagnosis I went to er because of a problem with my eyes. A doctor there told me I couldn't have it because I am not Turkish! They should know better!

      With regard to your ulceration, may sound odd but a steroid asthma inhaler just sprayed over mouth ulcers not inhaled will treat them very effectively. Steroid dampens down th inflammation which causes ulcers. I will ask my help group for any other meds that help.

      Please also get in touch with the American Behcet's Disease Association . Great source of info and support. If you need any advice info please just get in touch.

      Let me know how you get on. X

    • sarah71316
      sarah71316 margaret22116

      Posted

      Hi. Just wanted to update you. I went to my doctor and I told her about my symptoms. She told me while it is unlikely, Bechets is an option, but she still ran a blood test to see if I have herpes, and it came back negative. They told me to come back in if I get more genital sores, and that she would examine them to see if they look like Bechets. I've only had 2 genital outbreaks, and they were a year apart. So it's just a waiting game to see if they come back. rolleyes really wish I had some confirmed answers.

    • margaret22116
      margaret22116 sarah71316

      Posted

      Ok good start. Would still insist on being referred on to a specialist though xx
  • hilga48924
    hilga48924 sarah71316

    Posted

    Sarah, your symptoms sound like a very rare disease called Cicatrical Pemphigoid.  It is a mucous membrane disorder, generally diagnosed with involvement in the eyes or mouth, but can affect any mucous producing organ like the esophagus, colon, vaginal, etc.  I was diagnosed 3 years ago with this rare disease, and repeatedly am asked by my physicians if I have any vaginal sores that come and go, leaving scarring, or mouth, sinus involvement.  Have your doctor investigate the possibility.  It is hard to diagnose. 
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