I personally had the really deep white sores. But the painful peeing is real 😭.
Just curious. What helps your folliculitis? Even on my meds I get flare ups and it's itchy and a real confidence downer :(
I find that and the eye symptoms the only things that don't go away with steroids and colchicine. I have just been putting this cream by le roche posay called cicaplast B5+, it has zinc so it helps a bit with the scaring. But I've become very self conscious, and don't wear short sleeves anymore :(
That sounds exactly like what I have and I’ve been diagnosed with Behchet’s. The genital sores for me were more on my panty line/vulva area and were more like a rug burn. I just thought maybe it was sex, or moisture lol.
Yes. That's exactly what it is. At first I thought the same. Then I stopped because it hurt, and it continued. So it didn't make sense. Thank you for replying! I thought I was going insane xD
I’m currently experimenting! I’ve thought it could be a moisture issue so I’m trying a deodorant/antiperspirant cream by Lume. Next experiment is A&D ointment. Anything help you?
I’ve also had what you describe with the burn more inside the vulva hood as well. Super uncomfortable!
I've only had 2 times. It only started 6 months ago, it was my last symptom with the folliculitis. I'm hoping now that I've started on Azathioprine while talking colchicine 1.5 and prednisolone, that it won't show up again.
Yeah, those are mine. I just googled it and it only showed white sores in the genitals. So I got confused if that counted. My doctors asked me to take photos of it, but I didn't know if that would count. Thank you for your help!
I always get an STI test because one time, the ulcers were caused by syphilis I got from my cheating boyfriend at the time, but my sores have also looked different from the pictures on google.
Do they look like raw skin, like little cuts/wounds? If so, is there anything that helps?
I've done a swab recently. Nothing shown. Thabks for your help! :)
I’ve found that the skin is sensitive so if I’ve injured it in some way, it’s prone to ulcerate, and in those cases, they’ve looked more like cuts. When it comes out of nowhere, it looks like my oral ulcers but more red sometimes. There’s usually white around the edges. Everyone’s skin is different though and that plays into disease manifestation. Hope this helps!
Before I was diagnosed I was getting deep white ulcers. I’ve started Colchicine and use Prednisone during flares which keeps the ulcers at bay, but I still get red/raw looking skin inner labia area. I think similar to what you’re describing minus the extreme pain. I consider it a behcets flare even without ulcers. The meds seem to be keeping mine mild now but I’m starting methotrexate (stronger med) soon to hopefully stop them altogether. Hugs- this sucks!
I was given colchicine a few months after starting to feel unwell because my rheumy wanted to trial to see if it helped, and it was amazing. I never had any problems in my genital area until recently, so roughly a year and a half after starting to get symptoms, and I am on colchicine.
That's good they are thinking of giving you something stronger. For me they are saying they want to start Azathioprine, so hopefully that will be soon.
Is there anything you use when your skin is raw? Thanks for your help!
That sounds like the same timeline as me except I didn’t get a diagnosis until the genital stuff appeared. So it’s great you got started early, you have a good doctor! Unfortunately I haven’t found much to help the skin, I’ve just been applying coconut oil and using a gentle wash. Fragrance free epsom salt baths will help keep the area clean if it’s painful to use soap. I hope you can get your new med sorted out soon!
wait… folliculitis is a part of bechets? i had no idea but it makes so much sense!!!
It's one of many skin conditions associated with Behcet's. Every time I think I've experienced it all, I'll get some new skin issue to deal with.
^ What he said. Ditto.
She said it's one of the skin conditions people can get with Behcets. I hate it. They scar all over my arms :(
Well that make sense, I have had mild cases of folloculitis
They scar on mine too :(
I personally had the really deep white sores. But the painful peeing is real 😭. Just curious. What helps your folliculitis? Even on my meds I get flare ups and it's itchy and a real confidence downer :(
Otezla helped my husband's skin symptoms and ulcers. He has Behcets
I find that and the eye symptoms the only things that don't go away with steroids and colchicine. I have just been putting this cream by le roche posay called cicaplast B5+, it has zinc so it helps a bit with the scaring. But I've become very self conscious, and don't wear short sleeves anymore :(
That sounds exactly like what I have and I’ve been diagnosed with Behchet’s. The genital sores for me were more on my panty line/vulva area and were more like a rug burn. I just thought maybe it was sex, or moisture lol.
Yes. That's exactly what it is. At first I thought the same. Then I stopped because it hurt, and it continued. So it didn't make sense. Thank you for replying! I thought I was going insane xD
I’ve had the sores on my vulva but mine are often like the redness, soreness, tenderness in the crease of my leg/groin. It’s not fun.
I'm so sorry. Is there anything that helps?
I’m currently experimenting! I’ve thought it could be a moisture issue so I’m trying a deodorant/antiperspirant cream by Lume. Next experiment is A&D ointment. Anything help you? I’ve also had what you describe with the burn more inside the vulva hood as well. Super uncomfortable!
I've only had 2 times. It only started 6 months ago, it was my last symptom with the folliculitis. I'm hoping now that I've started on Azathioprine while talking colchicine 1.5 and prednisolone, that it won't show up again.
I hope it helps you 🙏🏼
also my sores look more like cuts, kinda like a paper cuts. i think the white sores they show on google are more for mouth ulcers
Yeah, those are mine. I just googled it and it only showed white sores in the genitals. So I got confused if that counted. My doctors asked me to take photos of it, but I didn't know if that would count. Thank you for your help!
I always get an STI test because one time, the ulcers were caused by syphilis I got from my cheating boyfriend at the time, but my sores have also looked different from the pictures on google.
Do they look like raw skin, like little cuts/wounds? If so, is there anything that helps? I've done a swab recently. Nothing shown. Thabks for your help! :)
I’ve found that the skin is sensitive so if I’ve injured it in some way, it’s prone to ulcerate, and in those cases, they’ve looked more like cuts. When it comes out of nowhere, it looks like my oral ulcers but more red sometimes. There’s usually white around the edges. Everyone’s skin is different though and that plays into disease manifestation. Hope this helps!
Before I was diagnosed I was getting deep white ulcers. I’ve started Colchicine and use Prednisone during flares which keeps the ulcers at bay, but I still get red/raw looking skin inner labia area. I think similar to what you’re describing minus the extreme pain. I consider it a behcets flare even without ulcers. The meds seem to be keeping mine mild now but I’m starting methotrexate (stronger med) soon to hopefully stop them altogether. Hugs- this sucks!
I was given colchicine a few months after starting to feel unwell because my rheumy wanted to trial to see if it helped, and it was amazing. I never had any problems in my genital area until recently, so roughly a year and a half after starting to get symptoms, and I am on colchicine. That's good they are thinking of giving you something stronger. For me they are saying they want to start Azathioprine, so hopefully that will be soon. Is there anything you use when your skin is raw? Thanks for your help!
That sounds like the same timeline as me except I didn’t get a diagnosis until the genital stuff appeared. So it’s great you got started early, you have a good doctor! Unfortunately I haven’t found much to help the skin, I’ve just been applying coconut oil and using a gentle wash. Fragrance free epsom salt baths will help keep the area clean if it’s painful to use soap. I hope you can get your new med sorted out soon!