Scared!!: Just been told I need a mouth ulcer... - Behçet's UK

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Scared!!

Emily-123 profile image
19 Replies

Just been told I need a mouth ulcer biopsy? I’m absolutely petrified as I’m terrified of things near my mouth (I’m 16) what dis it consist of?

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Emily-123
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19 Replies
Blearyeyed profile image
Blearyeyed

I had a lip biopsy recently and I have to say it was easier than going to the dentist , the staff were caring , amazing and professional and the way the work was done was very different to dental work.

I haven't had an ulcer biopsy yet , but I assume the system will be similar , you will have a outpatient appointment and if necessary a local anaesthetic which is far better in terms of feeling work being done than standard dental anaesthetic, they could keep you there half a day or a few hours depending on the anaesthetic you need , but the biopsy itself takes very little time to do, about ten minutes of actual work . The job was done while awake but lying down on a table which made it easier to keep your mouth open. I asked the physicians to keep talking about interesting things while they worked and this really helped to make me forget what was going on. If you tell them that you are nervous about the work , especially with your age, they will make sure you cannot feel a thing before starting , and if you are concerned about the after effects they will give you a injection of pain relief to last through the day.

I do not know if your type of biopsy will involve any stitches , it may be that they are not necessary for the type of biopsy you are having , but if you do they will be dissolvable and come out in about a week to ten days .

I know biopsy sounds like a scary word , most of us only hear about it being for something heavy, but from someone who suffers alot with oral pain and sensitivity and has issues with dental work in the past my experience has been that it is alot less stressful or painful than you imagine. Just ask all the questions you need to, tell them if you have issues holding your mouth, jaw or head in a certain way and they will take this into account and get them to chat to you and things should be fine.

The big positive, you will be one step closer to full diagnosis and care that is right for you.

In after care, it can be painful, swelling can last longer with BD , and you need to keep an eye out for infection. It may also trigger a response that bring on an ulcer or two, but if you do your usual mouth and ulcer care ( ask for them to give you a prescription for medicated mouthwash, lidocaine gel if you are allowed it and buccal tablets in case of ulcer break out ) , wash your mouth with lukewarm green tea or salt water after food it should be fine.

Be careful when brushing or eating for a few days, and don't eat anything really hot or cold for a few days as this can cause bleeding. Choose softer foods with no chilli, and low salt and sugar for about a week while healing. Probiotic yoghurt ( not straight from the fridge ) , sugar free jelly give relief and help settle your stomach too.

I hope this helps , if you want a chat please send me a message on my chat board and don't panic , all of this is new and scary but I am sure everyone there will want you to feel as relaxed and comfortable as they can.

Emily-123 profile image
Emily-123 in reply to Blearyeyed

Thanks so much for this!

Is it in the centre or a different part of the hospital? I guess I’m confused as to why I need one. (I’m on antibiotics for tonsillitis) and the infection has triggered off the severe ulcers. The nurse is prescribing me the mouth wash. I’m neutropenic so infection is a big thing. It’s not until next week and the ulcers came a couple of days ago. I shouldn’t be scared, I’ve had a kidney biopsy which is far more serious, but I was under a general anesthetic. Always here as well

:)

Brichel profile image
Brichel in reply to Emily-123

I had one in the vaginal area. It was scary also but to be honest it was rather painless. They numbed the area and it was over rather quickly.

Good luck and big hugs.

Emily-123 profile image
Emily-123 in reply to Brichel

Do you know why they do biopsies? The lady on the phone says they can’t diagnose based off photos. I’m on colchicine which makes them clear up quickly and can’t say if they’ll even be there by next week x

rooser1 profile image
rooser1 in reply to Emily-123

When I had my vaginal ulcer biopsied- they were checking for viral and bacteria properties. Basically, a lack of anything, except inflammation, can be helpful in diagnosing behcets.

No need to be nervous. They will numb you up. I would think it would be relatively quick. Sounds like youre in the UK, not sure how they are with benzodiazepines, but see if they could prescribe one before the procedure to help keep you calm. I use them for dental appts all the time in the USA.

Emily-123 profile image
Emily-123 in reply to rooser1

Ahhh thanks for this!!

After being almost completely diagnosed, I feel like they’re going back on themselves.. saying “they can’t diagnose from pictures”. My last appointment I didn’t have any mouth ulcers. That’s the only reason they’ve questioned it. I’m just terrified they’re going to say there’s nothing wrong,

Colchicine is having an effect but I still have a constant fever. I think it’s a

Unfortunately a common thing to be afraid of doctors and tests with this disease as so many of us, sadly have been questioned in the past.

And yes, live in the UK

rooser1 profile image
rooser1 in reply to Emily-123

Yes- being questioned and seeing all those doctors can take a toll- but it also teaches you to be your best advocate! How to stand up for yourself- and to educate yourself and your dr. Always keep clear timelines of symptoms and medications. feel free to print things for them.They are not mind readers- and we know this disease better than anyone else.

so youre still experiencing ulcers on colcrys? are they of the same size or smaller? when I started colcrys they would be smaller and would heal much quicker.

Emily-123 profile image
Emily-123 in reply to rooser1

These are one of the first bouts I’ve had since starting. The tonsillitis has tired me out (still on antibiotics). Some look different to the ones I’ve had in the past. The tongue ones are painful but it’s okay

Blearyeyed profile image
Blearyeyed in reply to Emily-123

Hi,

Yeah , the antibiotics may have reduced how well the steroid works or your infection sent your immune system into overdrive, the usual way our bodies flare and symptoms rage up.

That is why the ulcers have returned.

The biopsy allows them to have a full 100% confirmation in clinical evidence , the right cells in your ulcer will prove once and for all that is BD.

But don't worry, if the ulcer does not present the right cells this time it won't mean that they will take back your diagnosis or stop your medication. They will just keep monitoring you and keep you on the drugs that are helping you still thinking it is BD .

You doctor wants to confirm their diagnosis entirely and when they do it could offer up more help too you.

rooser1 profile image
rooser1 in reply to Emily-123

Get them tonsils out! best thing i ever did. I used to tonsilitis a few times a month... over and over for the antibiotics. I ultimately ended up having chronic candida complete with thrush from 18 to my mid 20's. please be sure to take a good probiotic, one that has acidophilus for sure.

Emily-123 profile image
Emily-123 in reply to Blearyeyed

Thanks so much!

I see (hope you don’t mind me saying) you didn’t have ulcers present at your first appointment too? Do you mind me asking where you’re at diagnosis/treatment wise.

I have a fear of not being believed based on past experiences and it really gets to me. The whole “teens with eating disorders” things.

My age group is a difficult one to be in with a rare disease (under 18) and i need to stop being so paranoid

Blearyeyed profile image
Blearyeyed in reply to Emily-123

You are not being paranoid , unfortunately.

No matter what age we are many of us go through the same process as you have done, prejudged , snap decisions without joined up thinking by GPs who judge your symptoms without trusting what you say .

One of the positives about your age is that the system works alot quicker in its efforts to work out what you have and get you treatment , in theory , to cause you as little stress as possible.

I am still on the diagnosis path, with my next appointment at the end of October.

I am going armed with a whole set of photos of the ulcers and skin lesions, bloodshot eyes, bruising and swelling that have happened since my last appointment in the hope it helps them to make a decision on drug treatment and which tests to do next.

I am still highly Vitamin D deficient, despite treatment , but with the inflammation and other issues I have had in the last few months the fact that it is still low adds to the markers of autoimmune.

I am in that bizarre position many of us in the inconclusive diagnosis stage are , with no drugs as yet, and wishing that a big ulcer will turn up its ugly head just in time for our clinic appointment so we can get a biopsy or final decision and start care. It is terrible that we are put in this position by the system , especially for someone like you.

I want you to contact me anytime. Either by public post , or private chat, I am going to send you a message now to open that route of communication , so you can if you want contact me if you need a chat but don't feel like putting it on the public forum. We all have friends on here we keep in contact with that way too, and it does help.

You can just write if you are feeling down too, or for a laugh and to tell me you had a good day. Whatever will help you get through . I am happy to listen , I know that sometimes we don't talk enough about how we feel to friends and family because we feel embarrassed or don't want them to worry, and I know , from vaguely remembering what it was like to becyoung , that feeling is far worse when you are young .

Your past experience will understandably colour your judgement on what is happening to you right now, but it can also make you more aware of how you need to tell them your symptoms , and see if problems could arise. All of which you can ask for advice for with all the great people on the site or by messaging me.

At the moment, and I think most people who have been , or are being diagnosed for BD would agree , the tests and things that they are doing for you, and the fact that you were put on medication are all positives. They believe you, you photos , your symptoms , the extra tests are confirmation. And if you are getting positive results from the medication they wouldn't suddenly take you off it.

Take care and I am messaging you now.

Emily-123 profile image
Emily-123 in reply to Blearyeyed

Awh this is one of the kindest messages. And likewise I’m always here to talk.

I’m so sorry for what you’ve been through. Photos are a great thing!

Are you under a local Rheumatologist (you can reply to all this via dm) I have been referred to a Pediatric one nearby but then got an appointment with an adult consultant in a hospital I’ve never even heard of for next year!!! It’s bejng sorted out Thankfully.

My next clinic appointment is this month too. I’m so Blessed to be on colchicine and I know they’ll get there with you. You have a right to know what’s up with your body and a right to feel better

Blearyeyed profile image
Blearyeyed

It is likely to just be in the outpatients day surgery department at the same hospital if it is your nearest , or your local hospital or dental surgery clinic. You should receive a letter for the place in good time with all the advice about what they want you to do to prepare beforehand and what will happen.

They will ask lots of questions and do standard health checks beforehand on the day. Nothing scary , they just need to be sure you are not allergic to anything they are using and healthy enough to have it done that day. You can usually do your usual mouth care and take your medications before you go, although they may ask for you not to eat or drink for a few hours before, so you don't feel sick.

They are probably taking the biopsy now while they have the opportunity to get some material from some "good" ulcers , your current bout of tonsillitis has probably come at a great time , triggering the ulcers ,to add to their clinical results to give you a complete BD diagnosis. In other words, having to have it done, although a bit scary is a good thing!

Don't put any makeup on that day, leave your jewellery at home , just in case you can't have metals near their gadgets, and if you have long hair plait it and use a bobble with non metal parts or a scrunchie.

You could see if you are allowed to take an MP3 or your phone with headphones to listen to music if it helps. If you can't wear it , ask if they can put it on near you on speaker if music will relax you. And if it is in day surgery , and not just in and out at a dental surgery, take something that will amuse you while you wait to keep your mind off it, you often get an admittance time but a number of people get prepped at once so you can be there a few hours waiting for your turn. Make sure you arrive half an hour before the time on the letter, you will be seen quicker.

Emily-123 profile image
Emily-123 in reply to Blearyeyed

Ahh okay! It’s going to be in the royal London. Thanks for all the info! She was going to try fit me in tomorrow as the ulcers are very active now but next week is the earliest. Is it done under local anesthetic? Sorry for all the questions 😂

Blearyeyed profile image
Blearyeyed in reply to Emily-123

Never be sorry to ask questions , it's easier asking us folks on here and if we can put your mind at ease when you need it it makes us happy.

As I said above, my lip biopsy was done under a local , I haven't had a mouth ulcers one yet, but I assume if it is being done at the hospital it will be a local rather than standard dental anaesthetic. The local was better, it was totally numb and I didn't feel a thing , hardly even the movement. It also helped ease the full jaw area where I have stiffness and didn't cause extra pain in my head. So thumbs up.

As you said, in comparison to a kidney biopsy its going to feel like nothing at all. It's more the nerves we all get because we have had pain in our mouths with dental work which makes us worry, but it is nothing like going to the dentist , much easier .

May be worth making sure you drink alot from now until then , with your tonsillitis , you want to make sure your throat feels less sore and having work done can make your mouth and skin feel very dry so it's better to get well hydrated now.

If you can do dairy probiotic yoghurt each day is good for your tonsils too.

Good luck and any more questions , please ask , speak soon

sam0511 profile image
sam0511

Hi Emily - everything Blearyeyed says - they will just be keen to know if it is caused by any infection etc. All thinking of you - post how you get on x

Brichel profile image
Brichel

Mine was to make sure it was an ulcer. My Dr. at the time before he knew I had Bechet's thought it was a STD. Told him that was hard to believe as you had to have sex to get one😇. Some doctors never listen but in fairness to him it is rare in the US. This will soon be over so please don't stress out too much. The not knowing is always the worse.

Blearyeyed profile image
Blearyeyed in reply to Brichel

This instant jump on the STD bandwagon with many patients with ulcers and genital issues really makes me mad, especially with young people.

It is upsetting and makes people lose their confidence in going for help.

Why doctors can't be taught to be less judgemental and more compassionate in their questioning before making assumptions on the origins of people's symptoms I do not understand.

They are not psychic , and should stop making snap decisions on people's lifestyles based on their age and looks in a way they are not qualified to to so.

We would all get quicker diagnoses if they stopped using their own prejudices or moral and cultural opinions in the treatment room and actually listened to us and properly compared at our symptoms to current illnesses and joined up thinking.

Sorry , end of rant!!😊

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