Please help me guys :)

Hi guys, I haven't actually been diagnosed with Behcet's yet. I have been going to my GP for help with the symptoms I've been experiencing for over 2 years now, and have had many blood and swab tests for various other illnesses, only now have I been referred to a specialist to test for Behcet's and I haven't received the results.

I just wondered if anyone had any ways of coping with genital ulcers, mine can be so excruciatingly painful that it takes me half an hour to urinate as I have to take breaks so I don't feel like I'm going to pass out from the pain.

Also I wondered if others have experienced having absolutely no symptoms for as long as three months and then having major flare ups that leave you essentially bed ridden for days even weeks.

Last question is, if the results come back positive and I do indeed have Behcet's, then does it get better, do the symptoms occur less and is it less painful with medication?

12 Replies

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  • Hi and sorry for your pain. In answer to you questions in reverse:

    3.....sorry but there are no tests for Behcets. People are diagnosed by having at least 3 symptoms in a short period of time. Average time for diagnosis was 12 years but I believe it has dropped to about 6/7years.

    2.....Often with most autoimmune diseases we have flares from about 3 months to sometimes years and then we have remissions, again anywhere between 3/6 months to 4/6 years without a major flare.

    1..... help with ulcers. You can use a steroid inhaler for mouth, nose and genital/ anus areas. A few puffs in the mouth but DO NOT swallow 3-5times a day at onset reducing as things improve. Same in other areas. Also only wear loose cotton underwear and non in the night. Loose clothes no tights. When you wash or bathe don't rub, use a flannel ..NO SOAP and just dab gently and let dry naturally.....try not to use toilet paper.

    I do hope some of this helps . The good news is nowadays there is much more research into this disease and more doctors know about it. Meds have improved and we learn from each other's experiences on sites like this.

    Take care

    Billi

  • Thank you for the help, I didn't think there were specific test either, but I had my blood taken at a health centre and the paper work I had to sign and the blood test tube thingy specifically said Behcet's. I don't really understand how any of this works, but the paper work definitely said Behcet's.

  • Are you in the U.K.? I ask because from this site I've found many people from the USA, Australia and Europe don't seem to have the experts we have here in the U.K. We have centres of excellence in three big cities just for Behcets and all thanks to this site and the volunteers who help run it.

  • Yeah, I'm from the U.K I lived in Hampshire when I got the tests done, but I know live in South East London.

  • Hi Sadie,

    I have had Behçet's for 42 yrs (I am 60) I was diagnosed at 36 in the early 1990's . As you know, there is no specific test for Behçet's. I am guessing your paperwork said Behçet's as a possible diagnosis. Lots of various labs are drawn to check for inflammation.

    Usually (I am in the US but testing is pretty much the same) they will do ESR, or

    "Sed Rate" In some BD pts this is elevated.

    C-reactive protein, they check for other more common diseases like RA, Lupus, Sjögrens, etc.

    They do test immune function tests like C3, C4 part of the complement studies, antibody tests for other diseases I mentioned. Then the blood cell count, blood chemistry to check liver and kidney function. Over the 40+ yrs I have seen a rheumatologist, these tests are repeated. I was also diagnosed with Sjögrens.

    Behcets is an

    autoinflammatory disease.

    You were asking about pain of genital ulcers when urinating and you got some great suggestions. I have used a small amount of zinc ointment or even petroleum jelly. I have takenough the cardboard inside toilet tissue once it's used and just cardboard. Gently put at the vaginal and allow the pee to go through the tube to avoid contact with ulcers. I get ulcers on the perineum where I had an episiotomy during vaginal birth of my son. He weighed 10 pounds so it was a large incision. I have heard this from other women as well. So the tube method depends on where your ulcers are. I realize you posted 2 months ago. I hope you have gotten a diagnosis and treatment.

    Cindy

  • If there are any females who have any tips on the best way to painlessly urinate it would be much appreciated. It always just hurts so much, I try to drink as much fluid as possible to ensure that the urine is as diluted as possible but that doesn't always work.

  • I have found wee on the shower helps a bit even if it sounds disgusting and vagisil helps numb but you have to reapply every time you go after the toilet .

  • I know it sound a bit yuk, but urinate in a bath of warmish water. It will dilute the urine and hopefully won't sting. x

  • So your nearest Centre of Excellence is in Whitechapel. Ask your GP about it and he can refer you if they think it maybe Behcets. At the top of this page go to home and you will find all the details and info.

    Billi

  • Thank you for all of your help.

  • Sorry to hear about your pain. I'm an un-diagnosed male and have my appointment at Birmingham on the 13th Jan. I get the genital ulcers on my penis and can relate to your pain. Being uncircumcised it can take me 20-30 minutes to urinate during a bad flare up too. pulling the foreskin back it the most painful part as is putting it back. During flares I use salt water to soak my penis and this does help a little, once you get over the initial pain of revealing the ulcers.

    To answer your question about urinating, and I know I'm a male so forgive me but I remember seeing a product some time ago called a "she-wee". It's basically a plastic tube that would allow a woman to urinate standing up. But I thought it would help direct the urine away from your ulcers. I just thought it might help a little and sometimes a little help is enough.

    Stay strong.

    Dave

  • Hi, I really sympathise! While at home best way would be to sit in a bath of water or in the shower. At work I usually hide a small jug in my bag and pour warm water on the area while urinating. I also find warm salt baths help soothe and also vagisil helps numb the pain.

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