treatments: i get the vaginal ulcars but new... - Behçet's UK

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Frank22222 profile image
8 Replies

i get the vaginal ulcars but new symptom is these spots that pop uo all over my body they did a biopsy awaiting results but i also find my vision blurry at times lots of "goopy" and not just in morning ive been coping with the vaginal ulsars since 9 years old im now 30 and am so tired of prednisone and bactroban cream for flares i egt fevers that arent the norm for most during a flare and colchine didnt do a thing for my sysmptoms....my question what has worked what has not i also have depression and anxiety but for past year ive had reocurrring bacterial vaginosis its driving me mad lol ontop of the vaginal ulsars this too ughhh i tend to get vaginal ulsar then period aswell anyone else?

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Frank22222
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8 Replies
VickiOliver profile image
VickiOliver

I hear you with spots. I get them on my legs and shoulders the worst. They always scar. I also have them all over my jawline and on my cheeks.

jayymitch21 profile image
jayymitch21 in reply toVickiOliver

Same here!! I hate them

gillianTS profile image
gillianTS

Hi Frank22222

I used to have bacterial vaginosis a lot, I guess many will have there own ways of dealing with this, I stopped eating sugary foods and sweets, started taking probiotics supplements, as well as eating natural plain probiotic yogurt, I was told to use the natural plain yogurt down below too at night time it was a bit messy but helped sooth the area (use pads) its supposed to be great at reducing yeast, and I also use diluted tree oil in water to rinse down below after washing and each time going to loo when I have ulcers, I use this even when I don't, also use as mouth wash and have used neat on both mouth and genital ulcers when they are first forming but have to be careful not to use too liberally, use on cotton bud. I always blamed antibiotics but they use them to treat it too.

Hope you can get some relief soon.

Gillian

Frank22222 profile image
Frank22222 in reply togillianTS

Thank you im taking it all in because i feel like a damn fishery its been off and on for almost a year the bv like hellur

gillianTS profile image
gillianTS in reply toFrank22222

Hi, there is lots you can read although the following provides a greater view into how Candida can affect you including auto immune conditions etc maybe some of what you are suffering with can also be attributed to the problems you are having, gives some great thoughts on how you can make some simple changes to get great results:

mindbodygreen.com/0-8376/10...

Good luck, hope you get this horrid condition under control soon.

Gillian

rooser1 profile image
rooser1

i second gillianTS . Diet change is what helped me. The pills stopped working.... had to turn to homeopathic medicine and diet change.... I wish I had know earlier. I am a completely different person now. I went from a shell of a person with the worse anxiety and 15 diff meds to happy, healthy, and medication free. Its simple. No sugar. Its inflammatory. It feeds infections and disrupts the body's flora. Eat meat or fish, good fats and vegetables. Thats it. You will feel a difference after 10 days. I did. I also started a probiotic, a multi strain one and acidophilus (which I still take today) as it is wonderful for yeast and vaginal health. I had BV a few years back, and did NOT want to do the antibiotic route again as I had stuggled with thrush and yeast problems for YEARS, so I rubbed a bunch of coconut oil down there a few times a day and BOOM- within a week, it was gone.

As for mental, Obviously, behcets will take its toll on you. We've been there. Its not fun. They are now linking gut health to mental health these days.... and lucky for us, good gut health will help with the Behcets. Its a win-win.

Cut the sugar. All of it. You can do it. You wont regret it.

XOXO

My Rheumy tells me "you are just a walking rash" most of the time- and yes, they scar, itch, hurt, swell..vaginal ulcerations, blurry goopy eyes... Have you guys been looked at for Lupus? I"m asking because I seem to have a version of it that carries a lot of BD 'crossover', however using Humira (or Embrel, Ritux) can exacerbate Lupus. All I can tell you is that I've done the plaquenal *allergic to that*, colchicine (doesn't seem to help my ulcerations or humming/tingling/swelling hands), and more. Methotrexate injections (up to 25mg), Medrol, etc., for a year, we started Benylsta. It was sort of diagnosis and treatment attempt, I think. If it was Lupus, Benylsta would help, if it was BD, Benylsta would do nothing. That was the better choice for me, rather than trying Humira, Embrel, etc, which would help BD but, if it was not- I'd go through a really bad Lupus flare.

Again, I'm asking because Lupus and BD are so hard to differentiate, if the labs are not definitive for Lupus. My ANA is weakly positive, and the other markers are not showing. I hope SOMETHING that I said helps someone..

gentle hugs..

OpsDave70 profile image
OpsDave70

Have you ever tried Plaquenil? It stopped my oral ulcers in their tracks but only helped the ulcers down below a little bit. Humira has helped a lot as well. Prednisone is such a slippery slope. It is good to just knock down a flare, but it really jerks the body’s endocrine system out of whack. Here’s something else: Plaquenil helps with atopic fevers! There are some side effects to taking Plaquenil that you’ll want to Google, but in my own experience, I have found that the benefits vastly outweigh side-effects. Also, you will probably not see any meaningful benefits from Plaquenil for about a month, and the full benefit for up to three months.

For skin lesions, you might want to ask about Elidel Cream. It is specifically for autoimmune skin lesions, and it shuts off the skin’s inappropriate immune response. There are less-expensive alternatives to Elidel if your insurance won’t cover it. I had a horrible issue that started with ulcers and spread under the skin, blistered it, and the skin came off in large areas down below. Worst pain I have ever been in. The Elidel stopped that process completely and helped things heal over. I have scars but I’m okay with that as long as I never have to deal with that again. You do not want to use Elidel if your skin is infected. The medication is specifically designed to stop your body from going into the inflammatory, ulcerative process. A really good doctor / dermatologist will be able to work with you on how to proceed.

If you’re experiencing severe itching without lesions, Doxepin Cream will stop it, but you can only use it on small areas. Too much Doxepin can potentially get into your bloodstream and make you sleepy. If you notice sleepy side-effects, use less or stop using it depending on how you react. Most doctors do not know about Doxepin, so you’ll have to tell them to read up on it to see if it is okay for you to try.

I hope you get some good relief!

Best,

Dave

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