Behcet's Syndrome Society
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Genital ulcers, so much pain

Can someone please advise my daughter what she can do to help with the pain of genital ulcers, she has woken this morning with a very large one and during the day many more have broken out, she is in a lot of pain. Thank you

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Hi Tammirra

How old is your daughter as this would have some baring on what she could be doing for it.

Sounds pretty rotten....has your daughters G.P given her anything for it. I used Trimovate Cream from the doctor and that works reasonably well for me. Especially if I catch it when it is first appearing.

When it is particularly painful I have hip baths in warm water [I put a few of drops of Tea Tree Oil and some sea salt] which does tingle or sting initially but then that soothes them and also keeps the area clean and free from infection.

Also, more dramaticly I use an ice pack wrapped in a clean towel and hold it in the area. This has a numbing affect.

Sounds pretty drastic I know but, when you get it this bad, you are sort of willing to do anything.

I am sure others will have their own different remedies and so it maybe a matter of finding out which works best for your daughter.

I do feel for her and hope she feels better soon.

Hope this helps

Andrea

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Hi Tamirra, I know exactly how she feels. i agree with the previous answer with the salt baths, ice etc. But I use an asthma inhaler called beconase two puffs on each one every 2-3 hours.. Yes it stings slightly but it really works by numbing them and gets rid of them a lot quicker.... Ask your GP + tell them that other sufferers use this failing that ring your consultant + keep nagging ... hope this has been helpful

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Hi Tamirra

Poor girl! Once I was given a sulphur cream to try and apparently had an allergic reaction. Like Andrea I used an ice pack wrapped in a clean towel - the ice was melting as if it was on the stove but at least I got some relief! (Fortunately that only happened one).

I used to get very painful large genital ulcers but haven't had them for a couple of years - I think the drugs that I have used so far have got them under control (apparently the skin in the genital and mouth areas are very sensitive - that's why people often get ulcers there first).

In the short term I used to use a lot of preparations used for babies (nappy rash) - as well as prednisone cream in moderation.

In the long term what I found did help was to change my cotton undies every four hours (keeps the area dry but doesn't use anything to irritate the ulcer further) and I stopped wearing pantiliners (if I do start to use them the irritation comes back very quickly).

Lesley

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She is 24 and has tried the inhaler which didnt work, i will say about the nappy rash cream and ice packs, the docs have not given her anything only in the passed as they were treaating her for herpes, and of course we now know its not. Thank you all for your responses. x x

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Hi Tamirra

I feel so sorry for her I've just gotten over a bout myself... I was also diagnosed with herpes until they found out what it really was and that can also be devistating especially for a young woman as I was also 24 when I got my first ones. I am still paranoid even though every test has been negative.

I'm 27 now so if shes anything like me loves her skinny jeans but tell her to wear skirts or loose trousers even for a while after their gone... Baths always soothe, no soap products and cotton underwear as Lesley suggested :)... I've tried allsorts but unfortunately nothing really works apart from time and a course of oral steroids.

Oh and if she doesn't have to work keep lying down as the pressure of sitting is excruciating and burns!

Hope she feels better soon

Moys x

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Thank you, yes she does like her tight jeans lol, she also like you convinced she has herpes, they even told her she has got herpes as it showed in her blood, but ive also read that if you have had chicken pox which is the same virus then herpes will show up in your blood eventhough you do not have it, even a virgin who has has chicken pox will get a positive for herpes, how right that is i dont know.

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It is because they are related. I think herpes 5 is chickenpox. You can also get herpes virus 1. Which is coldsores virus which can be transferred through touch (If she touched one near her mouth and then wiped after a pee) could easily transfer the virus.

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Oh and painkillers too :)

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Hi Tamirra

That is the rotten thing about this condition as there are not many of us and that's why you will see the same names popping up each time to try and help.

A lot of us have been through the herpes diagnosis, before getting the behcets diagnosis and so know the frustration, humiliation and upset you have to go through to get proper treatment that works for you.

The cream I use [Trimovate] from the doctor is a combination of antibiotic, antifungal and steroid so it is really a catch all cream and I also use it on my bottom where I also get blisters. I tried just steroid cream and various others, which didn't help really me and so have stuck to this one.

I am afraid that it is really a matter of pushing your daughters G.P and/or specialist to keep trying things to find the right treatment. If she hasn't got a specialist for the behcets it may be worth asking for a referral to a specialist who deals with behcets.

The Behcets society has a list of consultants if you contact their help line on 0845 130 7329 or there are the new centres of excellance, which the helpline can also help with.

In the meantime trying some of the idea's that have been given above, may ease it.

Your daughter is lucky to have a mother who supports her like you do....and I am sure she appreciates it.

Good luck

Andrea

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Thank you for your response, yes she is under numerous specialists but hasnt been given anything for her genutal ulcers as she didnt get them for a long time until recently, she had them when the 1st signs showed there ugly heads and then the mouth ulcers took over with the Erythema nodosum and septicemia when she nearly lost her life, i have just received an email from her specialist at Hammersmith to say about the steroid inhaler and pumping that onto them, she has tried this but doesnt seem to help. x

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Be careful with the ice packs, I fell asleep with one once and woke up in more pain as I had given myself a cold burn.

If she is finding it difficult to urinate and retaining then Instillagel may help with the horrible experience of peeing, its a local anasthetic and does sting on application but not half as much as urinating and really helps give some relief.

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Sounds painful, but will make sure she is aware of that happening. x

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All excellent advice - it really is a case of finding out what works for your daughter. Sometimes people are put off by a particular treatment because it stings or feels uncomfortable - it's a balancing act. Not every remedy suits every patient, but you do sometimes have to put up with a bit of discomfort before you get relief. If any rememdy is unbearable then of course it isn't suitable.

Not sure if your daughter's ulcers sting when she pees - If you have a bidet then peeing whilst using it can ease any stinging that can occur when pee touches the ulcers. Alternatively you can run warm water from a shower head over the affected area whilst peeing. This also keeps it nice and clean and is possibly a better option than wiping with paper. She should use her own cotton towels, wear cotton underwear - NOT G strings or thongs or that kind of thing (not while she has ulcers I mean) and also it can help to wash her clothes separately from anyone elses with products suitable for sensitive skin.

If she can manage it, then going commando for periods of time can help.

Gently washing the area with a soluble steroid solution can also help.

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Tigerfeet my daughter has just rung me she is in so much pain we just dont know what to do to help her, do you know how long the ulcers on her genitals are likely to last for? x

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And I meant to say, I agree with the poster earlier about you being an excellent Mum - BD is so poorly understood and sometimes families struggle to deal with it.

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Thank you, i do struggle and i cry a lot when she is ill, but i have to be strong for her daughter who is only 4, i try my best. Thank you. x

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Tamirra, you are not alone. Those who support BD sufferers need support themselves sometimes. Seeing someone you love suffering, doing all you can but sometimes feeling helpless because it's such a difficult disease to understand and learning to live with it is a heck of a job and one you didn't apply for! There are support groups around the country - the Society will be able to tell you if there is one near you. They also offer support by telephone. If you have a facebook account you can join that and talk to other sufferers there if support groups are not your thing. There is a conference coming up in October - if it's not too far away for you then perhaps you and/or your daughter could go along to that. I believe they are running sessions for carers this year.

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Hello Tamirra;

Colchicine, Behcet's disease, oral-genital ulcers, erythema nodosum and arthritis, symptoms and treatment agents on the findings of one of the oldest known to be beneficial. Vitamin B complex with the use of benzathine penicillin with colchicine mucocutaneous (mouth, genitals and skin lesions) lesions and effect on arthritis,

To discuss;

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"Tigerfeet my daughter has just rung me she is in so much pain we just dont know what to do to help her, do you know how long the ulcers on her genitals are likely to last for? x"

I'm sorry she is in so much pain - I'm afraid I have no idea how long they will last for - it's really a case of finding something that works and sticking to it - with so many options it can take a while to find the right one. Different treatments work for different individuals. If she can eat a healthy diet and try and stay as positive as possible - keep as active as she can and carry on with any interests she has without pushing herself, resting regularly - easier said than done sometimes but just 5 minutes here and there is better than nothing. Getting upset and uptight doesn't help so anything that can help her to carry on as 'normal' and to be able to relax and enjoy life without focussing on the negative will help any symptoms she has.

It's common to get caught in a downward spiral when pain is overwhelming and stress kicks in along with other negative emotions. Support is extremely valuable at all times, but especially at times like this.

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Hi,

I can answer this from the daughters perspective, I had some horrendous bouts of genital ulcers and actually ended up in hospital on one occaision because I couldnt walk, pee or anything. I have also had a child and would prefer to go through childbirth anyday than get a bad bout of ulcers. Try and get your daughter to take some pictures as I found people dont take me seriously when im not in an outbreak because they cant understand how bad they are. She needs to take one day at a time and it feels like its never going to end, you need to keep insisting on getting seen by specialists as they are the ones who can help you find the thing that works. It can take a while but once she knows how her symptoms develop she can stop them in there tracks. The tiredness that accompanies the ulcers doesnt help to deal with the pain so lots and lots of rest is vital even with a 4 yr old. I hope the end is in sight. Also when you have found something that helps or seen a speacialist get a passport letter to take when you see any health speacialist it tells them what her condition is or you have to go through explaining it over and over or some people just dont believe you and will still persume its herpes.

Good luck, xx

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You mention a passport letter, would we be able to use that in a and e to be seen quicker, as sometimes when we have to go there when Sinitta is very poorly we still have to wait hours, i think the longest we have waited is 6 hours, ive complained to the reception and so has her father but all we get back for an answer is, "there all ill here" one time when her ulcers in her mouth were so bad before medication she is on now, she had to sit in the toilet all the time we were there spitting in the sink as she was bringing up blood and unable to swallow, and she still had to wait, on that occasion she was admitted for a week, what we want is a letter to show that means we can bybass everyone and be seen, but nobody seems to care. x

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This is excellent advice emiepy

I carry a letter with me all the time and when I go to new specialists I hand a copy into the nurse to put on the file for the Doctor to read before I see them.

I have found this is really helpful and the doctors like it because it saves on consultation time.

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I doubt it will get you seen quicker in A & E im afraid because they do prioritise on threat to life not suffering unfortunatly. I dont tend to go to A&E, dont you have out of hours doctors near you, I take my letter along to the out of hours doctor and tend to get seen very quickly, longest I have had to wait is two hours, but suppose thats postcode lottery.

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Oh ic, yes we do have out of hours docs but there just as usless as our normal doctor, they prescribed Sinitta the wrong medication 3 weeks ago for tonsillitis and she was rushed in to Ashford hospital with breathing difficulties............. who can you trust!!

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Hi everyone I am just new to the sight and so far from what I have read you are a nice big happy family-do you have any room for another ?

This question I have is how long did it take for everyone to be diagnosed with Bechets ? I have been suffering for between 18 + 20 years, my dermatologist says she is 99.9% sure but because she us not 100% then she says she cannot diagnose for defenate. Please help and can someone advise me what to do next, thanks from OorWullie.

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Hi and welcome, yes we are all lovely friendly helpful guys on here, my daughter took 3 years until I finally diagnosed her and told the hospital what it was she had, it took a while for them to believe me but a mother knows her kids better than anyone, you have really got to just keep strong and keep pestering them until a true diagnoses is found. Good luck and post any probs you may be having and we all will try to help. x x

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