Genital sores

[Fedupfemale87]

I'm at a loss with how to ease the pain. I feel so down they are ruining my life. They come out of nowhere too. The only thing j did differently was gi horse riding last week then when I came home to shower I felt sore down below when I was drying myself.

Now I have an ulcer with what seems another one or two on the way.

I'm am trying colchicine for the first time. Does this help?

[Jeans1]

Hi,

I feel your pain. I too have suffered for years with behcets sores. I can tell you what ‘works’ for me. It certainly doesn’t fix them but is a big relief.

Get yourself some difflam mouthwash ( the genital skin is very similar to the mouth ) soak a cotton pad in difflam and hold over the areas, it will sting at first but contains an anti inflammatory and will offer relief. My consultant advised this and it’s been so helpful for me.

The second thing I use prescribed by my specialist is xyloproct - it’s a haemorrhoid cream officially but has 5 % lidocaine to numb and 2 % steroid. You will need to ask your gp for this.

I did take colchicine but it caused gastro upset so had to stop.

Hope this helps.

[Fedupfemale87 in reply to Jeans1]

Hi thank you so much for this, I will ask for the cream too. Thank you for the difflam tip too I will try anything!

Any tips on how to keep flares at bay?

[Jeans1 in reply to Fedupfemale87]

I wish I knew why they appear when they do, for me it’s related a lot to menstrual cycle, and most months I seem to get them just before a period, I think this is common with behcets. Some people use steroid asthma inhalers on the genital sores, but I have personally never tried this. I have taken many disease modifying drugs over the years and I’m currently on mycophenolate.

[Lizzie46 in reply to Jeans1]

hi will try these products too. i also had to stop colchicine for same reason. thanks for posting.

[Arith50]

Personally I did not find Colchicine work for me, like Jeans1 it caused me gastro upset but everyone is different. I tend to use Hydrocortisone(Hc45 available over the counter) cream or Prednisolone oral tablets or both. Mouth ulcers are a main concern for me. Currently trying Methotrexate and also had biological therapy recommended as a next step. These might be worth a mention to you rheumatologist next visit. Best of luck

[Fedupfemale87 in reply to Arith50]

Thank you I'm writing all this down! 🙏 xx

[Arith50 in reply to Fedupfemale87]

I also found low carb (keto diet) of benefit to reduce inflammation as mentioned in another post. I regularly take turmeric, eat meat and veg , methylfolate(folic acid, spinach etc..) which is a must if taking methotrexate but recommended even if not. I hope some of these recommendations help. As a male I would use hydrocortisone and plasters to stop soreness from genital ulcers but not sure if this is an easy option for females. 2 days would make a huge difference.

[Thamy]

hello Fedupfemale87 ,

I feel your pain here.

About treatments, the first line is colchicine in the morning 1mg but 30min before you must protect your stomach with pantoprazol ( this one have fewer interactions with any other anti-flamatory, it’s also a good idea to take probiotics to increase your gut microbiota, during the treatment with colchicine).

I take the max amount (2mgD/N) of colchicine because of those sores.

That’s an over the counter ointment “Lidonostrum Gel 2%” with lidocaine, but it’s only available at pharmacies.

The max of colchine started to works for me after 4-6months. It took time but was worth the wait.

Use cold water at the genital sores, and dry carefully before the ointment.

I hope it’s useful info.

Wish you a really fast recovery.

Thamy.

[Malbecmogs]

Really sorry to hear this, when I get flare ups like this I put a small amount of hydrocortisone cream on and that usually helps to heal them but maybe check with your doctor if this is ok! I’m also taking apremilast which has been a huge help x

[abby123]

Hi, I have also suffered with mouth and genital ulcers for many years and have tried so many prescription and herbal products.I have found the only thing that works for me is Emla which contains lidocaine, it numbs the area for some time and allows relief. This is available on prescription as it was also recommended by my specialist at the Centre of Excellence.

My pharmacist recommended using Orajel 10% for my mouth ulcers, which numbs the area andihavefoundthisis so effective. Itallowssomerelieffromthe pain andto be ableto eatanddrinkwhichis so difficultduringthistime. Orajel is normally sold as dental gel or for toothace, however is available on prescription dependent on your GP.. I hope this is helpful. Abby x