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Posted 4/4/2008 9:37 AM (GMT 0)

Hi Was wondering if any of you have  Vulvar Crohn's disease as I have recently been diagnosied with it and I don't know what will happen to my vagina sad

I Am SO Surprised!!!

I do'n know what could be the next gift that crohn will give me!!

Posted 4/4/2008 9:39 AM (GMT 0)
27 year's old female, Diagnosed with Crohn's disease 5 years ago,perianal fissure,Currently on Pentasa tablet 6 pills/3x day and PENTASA Suppositories 1g.Vitamins + B12 Injections
Posted 4/4/2008 9:43 AM (GMT 0)
Hello Nina, and welcome to HW. I hope you find a lot of support here, as well as all the answers you need.

I've never heard of vulvar Crohn's disease. Do you mean fistulas, or are you having other problems too?

I.
Posted 4/5/2008 9:30 AM (GMT 0)
Crohn's disease of the vulva is a rare disease.I am the unluckiest person in the world.
also you can find some information about it in pubmed and also here
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1293193
Posted 4/5/2008 7:14 PM (GMT 0)
Wow, I've never heard of this before. I am so sorry you're facing it...
Posted 4/6/2008 2:04 AM (GMT 0)
nina-b, welcome to Healing Well! I am so sorry that you have developed this. From what I had read before, this can be quite uncomfortable, if not downright painful. As you know, this is a quite rare extraintestinal manifestation [EIM] of Crohn's. I have my share of the wierd EIMs also. Thankfully none involve the "girly" parts. Can you tell us how your doctor plans to treat your problem? I am quite curious.

Glad you joined us! ~~ Ides
Posted 4/6/2008 9:51 PM (GMT 0)
yes--I'm with you. I didn't know we had an official diagnosis. Years ago my gyn sent out samples of my blisters to make sure it wasn't herpes or the like. My own GI thought my disfigured female area and the blisters might be something scary but alas, it's just the crohn's. I have several types of symptoms, the biggest being little blisters, little pimple-looking things, and a few stallagtites! I can't tolerate metronidazole. When on prednisone, they all seemed to shrink. With lots of D, it all gets worse.

My gyn says it like this: lots of women have cauliflower looking terrible infections and warts. I just have a few extra Georgia O'Keefe wrinkles and additions.

Keeping the area dry really seems to help. Popping the blisters doesn't--makes me more uncomfortable. Please keep us updated. I'd love to know if there's more treatment out there!
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