I’m currently waiting for a 1st appointment at the London centre but been told there is a 7/8 month wait 😭. I am 42 and suffered badly with mouth ulcer from a teenager.
In the last year I started getting genital ulcers. First few times just the odd one but in the last 3 months or so they are getting more persistent and more at a time.
It’s so painful. In the end I went to sexual health clinic just to rule out any STI even though I have not been sexually active for 3 years and never been diagnosed with an STI previously Dr’s kept saying oh it could be herpes so I wanted no matter how humiliating to rule that out. Tests all negative for STI. I did explain they never came up in blisters just straight ulcers.
I have eye issues and always had stomach issues and have had unexplained ulcers found in my bowel on colonoscopies which were biopsied.
Anyway my question really is how do people cope with the pain of the genital ulcers and what do people use? Can I ask for anything in particular? My GP has recently prescribed some Betamethasome cream. Is there anything else I can do/use?
TIA
Written by
Missyjasper
To view profiles and participate in discussions please or .
Colchicine is the first line treatment for ulcers in Behcets. Your GP should be able to prescribe that while you wait for an appointment at the Behcets Centre.
The typical starting dose is 500 micrograms twice a day taken with a meal. For some people it causes an upset stomach but this is much less likely if you take it after eating. You take it long term and it acts to prevent the ulcers from getting started.
If you can tolerate it, then it is very effective for reducing the ulcers, especially the mouth ulcers. I used to be plagued by them and Colchicine has almost stopped them in my case.
Hopefully this will help reduce your misery a bit while you wait :o)
Sorry MissyJasper... I got the Colchicine units wrong, I put 500mg, but meant 500mcg (micrograms) -- I have corrected it in the original post, but letting you know here. Truth is, Colchicine only comes in 500 microgram doses as it is toxic at doses above a few milligrams.
Docs most often use Colchicine for Gout so might think you only need to take it for a few weeks while you have the ulcers, but in Behcets you take it long term in order to prevent the ulcers. I still get the odd ulcer, but much less often and they heal much quicker.
Good luck, hopefully you don't have to wait too long to see the Behcets Centre.
I take colchicine for ulcers and joint pain but I've also be prescribed by my consultant clenil modulite inhaler which I spray onto my tongue when I start to get ulcers , it really does help, they seem to heal quicker and it stops them from becoming to large. I hope this helps a little as we all know how it can get you down. Sometimes I don't know how I get through the day . I always say to myself I'm not a Behcets suffer I just live with Behcets.
I really do sympathise with you. I can tell you what I use, this is after many years of trial and error for ulcers both oral and genital.
So get the gp to prescribe some xyloproct - this was prescribed for me originally by Addenbrokes it’s officially a haemorrhoid pain relief but it’s so effective for Behcets ulcers, it has 5% lidocaine and hydrocortisone a steroid, its honestly great and numbs the genital area.
The other things I use are Difflam sore throat rinse you can soak a cotton pad and hold it on the genital area - it’s an anti inflammatory and also numbs the area . This has also be used in the mouth for mouth ulcers.
You can get steroid mouthwash tablets from the gp too, that are dispersed in water.
In the meantime, if you have any difficulty getting any of this prescribed by the gp until you see the specialist , you can buy germaloids over the counter it’s also a haemorrhoid numbing cream and less strong than xyloproct, but may offer some relief, you could also try a lavender heat bag in the area.
Dermovate ointment (clobetasol propionate) stops genital ulcers in their tracks. Apply at first sign of one. The GP should be able to prescribed. Supplementing methylfolate / or eating loads of veg, reducing white carbs especially sugar and eating an unprocessed diet help me.
Excercise helps alot but you have to build slowly.
I read Glucose Goddess and Dr Van Tulleken processed people book last year. Plus followed Zoe Nutrition (expensive but you can get a lot for free just listening to podcast).
I feel like I have my life back. Bechets still here but hardly noticeable.
I feel for you but don't fret. Once you find a way to manage them you'll be good to cycle again. I had massive ones age 14. They were horrible. Couldn't walk or pee and every Dr in town wanted to see this medical anomally! It was over 20 years till diagnoses. Thankfully the Dermovate ointment was pres ribed and is magic. Maybe I've been lucky. Haven't had one for at least 6 months and then one popped up yesterday. They regularly tried to appear in my teen years and twenties. Monthly at least. Moved to once or twice a year now.Bechets is very odd. Just pops up where ever it feels like.
I'm the same age as you. I think our hormones may be causing us trouble +/- may be getting worse at glucose regulation. I'm having to work harder to stay healthy.
Sorry -- I got my units wrong -- I meant 500 MicroGrams... so 1mg a day in total (same as you) but split across 2 doses 😊. I've corrected that in the original post. Cheers 🍻
COLCHICINE... is our BF, you need to contact a reumatologist, the OBGYN must of them don't understand our situation, and try to look for answers away from our reality.
Being in the UK I would be mindful that quite a few GP's will not prescribe Colchicine despite this drug being used in most cases as a first try drug for Behcets symptoms. Works for a great many people worldwide, not me. Insofar as other drugs being prescribed by NHS specialist/consultants for Behcets. GPs are not obliged to provide every possible medical service to their patients, only those for which they have been contracted for, and these contracting arrangements may vary from place to place. My GPs would not prescribe Colchcine or any other drug related to Behcets. It might be because they are not specialists in this field or only allowed to prescribe certain drugs for certain specific conditions. Given Colchcine is widely used for other conditions I would have thought by now Colchcine would be on their list for Behcets.
It took decades for my own diagnosis which started in my teens, lapsed in my late 20's and returned in my mid 40's. All I had available to me was alternative therapy. I used lots of tea tree oil mixed thoroughly with cooled boiled water as a mouth wash and for rinsing myself on genital ulcers, I even used it neat, still do, for oral ulcers.
It is incredibly important to keep things clean so even when you have eaten or had a drink, other than water, rinse you mouth out. If possible make sure to clean your teeth after eating. After going for pee, rinse with warm water or a mix of water and tea tree oil, shake vigorously prior to use. I also use water to dilute whilst peeing if stinging. I use the solution to clean /final rinse.
If it stings when peeing then try a shewee or similar. Some people get relief from peeing in a bowl/bucket of warm water.
Acting upon the slightest little tingle you might feel in your mouth or on your genitals is very beneficial. Trying to stop and or reduce the ulcers before they manifest into a big ulcer is hugely important. I use tea tree oil simply because it has helped, but more importantly because many over the counter mouth washes made things worse. I do have Betamethasone soluble tablets now which I use in exactly the same way as tea tree oil (keep bottle in my bag), and especially if I am not in a position to use Betamethasone. Used prednisone soluble before this.
I was advised by the consultant to try to reduce/remove refined carbohydrates, sugar drinks from my diet.
Many many drugs can be offered but usually via a consultant after a diagnosis. While you are waiting fir your Behcets referral, if you feel like it, suggest to your GP that he/she contact the hospital Rheumatologist to ask for advice on a drug they might just reply given the waiting lists in the UK. Mine are happy to do this for me.
Hi thank you for your reply and advice. I spoke to my GP today and he is going to contact a rheumatologist about the colchicine. 🤞🏻I can get some help before my referral. I do seem to be having a massive flare atm mouth ulcers are relentless and he said maybe use the dexamethasome rinse daily for a few weeks to see if it all calms down. I will get some tea tree as a few people have mentioned that now x
The dexamethasome mouthwash, like other steriod mouthwashes can usually be used 2-3 times per day. When I saw oral and maxillofacial the consultant earlier this year she advised I could use steriod mouthwashes slightly longer and definitely do not rinse my mouth out or drink anything for at least 30 minutes. I use it last thing at night.
She actually changed the mouthwash saying Betamethasone was the correct mouthwash for Behcets. I had only been prescribed the other steriod mouthwash because my GP did not recognise it and the pharmacy refused to get it in. Consultant quite insistent with the GP this time so eventually after years I am on the correct one for me.
Good look with the response from Rheumatology and really Hooe you start to feel some improvements very soon x
P.S careful not to ingest too much of the tea tree. Although I have read some people drink it in water daily...
Just to add , why not try phoning the Behcet's CoE and asking if you can be given any cancellations for an earlier appointment if possible. I was referred to Aintree in 2018 and my original appointment was for December and I was given a cancellation for the beginning of August. It's worth a try.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Effective pain relief for genital ulcers 
Suspected Bechets - affecting me mentally & physically 
Mouth Ulcers
Gastric Ulcers
havent yet been disgnosed with behcets but have mouth and genital ulcers
