Finding the Answer to BEHCET's

I was finally diagnosed with Behcet's after doing my own research!  Scared but determined, I began searching images of genital lesions on the Internet until I found one identical to mine.  It said Behcet's. 

I made an appt. with my gyn and respectfully suggested (insisted) on a biopsy.  Her first thought was Herpes but, I knew better!  Thankfully, she was open minded and willing to consider that it could be something else. Two weeks later, the pathology confirmed "vasculitis, consistent with Behcet's."  That lesion and the ones before finally had a name, Behcet's.

Of course, I still had to be seen by a "specialist" before a formal diagnoses could be made.  My gyn felt I needed to be seen at a well known teaching hospital because Behcet's was such a rare disease.  I flew to Johns Hopkins in Baltimore to finally get that diagnoses but only after reviewing my history of oral and genital ulcers, chronic uveitis, hypersensitivity to skin problems from simple bug bites to venipuncture.  But, the most valuable piece of information was having had the biopsy that I had insisted on!  I suppose I would still be wondering about the ulcers if it weren't for the information I obtained from the Internet!  I am thankful and so grateful for the information on the Internet that helped me find the answers I needed!  Step one was finding a diagnoses, step two was finding "Health Unlocked" to talk with others about the disease.  

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  • Hi and well done to you.  Uncortunately and for many of us who have been suffering for 30 years or more, we didn't have any sources to go to and it took most of us a minimum of 12 years to get a diagnosis.  That said, we are all really glad that diagnosis, meds, treatments have become much easier to get.  Most of this is thanks to the ...behcets society.org.co.uk.  They have telephone helplines, monthly newsletters and are responsible for this site, the Centres of Excellence and much research.  So things have improved very much, take a look at the site I've given you and find out even more.

    Good luck

    Billi

  • God we are twins! Same thing pretty much happened to me. Googled imaged- found the behcets website. It seems so rare- I was like there is no way- am I making my symptoms fit the criteria? I had lists of symptoms and medical documents since my teenage years and I brought it up to a PA at a patient first. He seemed unconvinced but did not rule it out. My gyn was convinced it wasn't herpes. She actually seemed too excited that it wasn't herpes and also insisted on an impromptu biopsy... same results. inflammation- no viral or bacteria activity. I am now her first BD patient. Finally got over to a Rhuematologist, most symptoms subsided by this point- and she diagnosed me off my verbatim symptoms and test results.

    PS: I live in Baltimore. Never went to Hopkins- but we do have some damn smart doctors here!

    I'm very happy for you that the pieces matched up quickly. Take care!

  • I'm glad you have your answers. It can be frustrating at the least. I thought there's no definitive results from a vagional biopsy leading to a Bechets diagnosis. I'm just curious because my 2 biopsies  weren't anything that pin pointed  to Bechets, and herpies was ruled out,  but yet they say it's Bechets. Any information is helpful to me at this point. Good luck to you! 

  • Yes, my biopsy result read, Vasculitis, consistent with Behcet's.  

  • My biopsy  (UK) came back with "entirely consistent with Behcet's Disease" - this after many years of illness and misdiagnosis.

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