I was diagnosed with this 18 months ago. I was referred to hospital for biopsy which was traumatic. The doctor held my tongue and stuck needle straight in. The pain was so severe I passed out. My gp commented that he thought my treatment was brutal and unacceptable.
I was then referred to a different local hospital (we live between the 2) and was treated with kindness. I had further biopsy which was painful but bearable. Unfortunately this doctor now wants to refer me on as steroids are not sufficiently effective in controlling my OPL.
I have an appointment this week at Bristol Dental Hospital and am terrified of yet another biopsy. I am also frightened of being experimented on by students (not in general but in this instance).
has anyone any experience of this hospital?
I don't know anyone else with this disorder and feel quite isolated
Hi soocee
Sorry to hear you have this but do try and not get to stressed it does seem to make it worse, there are many ladies on here to talk to and different ages, how old are you ? Are you in the U.K ? I am 57 and from the U.K I have OLP and skin LP, try to avoid spicy foods and to much sugar just because it burns the mouth causing inflammation.
Hi Karen, thanks for responding. I am 67 and otherwise fit and healthy. I can't eat any spicy food at all. I eat too much sugar now because ice cream and jelly etc are easy to eat and I get hungry. I have lost about 2 stone. I live in the south west.
I have OLP too, diagnosed a few months ago by my dentist, confirmed by my doctor and the periodentist. Perio suggested a biopsy, just to be on the safe side so I am scheduled for one on 11/20. My OLP does not cause pain, my gums look funny and I have those white lines on the sides but that is about all, i try to take extra care of my mouth and do rinses and brush after meals etc..what i am getting to is this: I do not understand why you had to go thru so many biopsies? Unless your OLP is much worse than mine, I do not know why your treatment is so drastic.
I know it is difficult, but you need to say no to any more biopsies, you have already had biopsies (Two)! You know what you have been suffering from is (Oral Lichen Planus) Do not let people take control, to either experiment or confirm what you know you already have, it will be extremely stressful. What you need now is treatment, not more biopsies!! What steroids have you been taking?I cannot imagine why they would need any more biopsies, but with Oral Lichen Planus and Lichen Sclerosus many doctors are uninformed, and therefore, will quite happily suggest more biopsies because they are often clueless! I had a tongue biopsy about thirty years ago, and it was stressful, and I would never have another one, and you have had two!!! Take someone with you to your next appointment for support, you do not need any more biopsies in my opinion, what you need now is kindness and treatment options.
Thank you. It was the most painful experience of my life. More so than a broken leg and childbirth. My appointment is on Tuesday and I'm terrified
I have been on and off prednisone and a dissolvable steroid as a mouthful wash. I get temporary relief then it comes back. The worse site by far is the area where I had the biopsies
Can you take someone with you for support? I know it is difficult but you sound very vulnerable and I hate to think of you going on your own.. What was the dosage of prednisone and for how long have you taken it, and when it comes back is it worse or the same? Because Prednisone works, but is only a temporary fix, they need to be giving you something else to take for when you come off of the Prednisone. How bad is your mouth, what are your symptoms?
I have ulcers all along the left side of my tongue and my left cheek. Also on right side of mouth but not as serious. It exhausts me. It is also ruining my social life as impossible to go out for a meal with friends. I get so embarrassed in restaurants trying to tweak the menu so that I can eat. Folk are beginning to think I am fussy. I haven't shared my diagnosis with anyone but close friends and family as I feel embarrassed.
Sorry to moan so much. Will stop now.
That sounds truly horrendous; I was never that bad, and at my worst I was miserable. Social events often revolve around food, so I completely understand how difficult it can be. There is no shame or embarrassment in letting people know your problem; it is far better to be honest, rather than think that you are a fussy eater. Will you let us know how you get on this Tuesday?
Trouble is I try so hard not to let this define me. I don't want my friends to constantly ask how I am and overload on the sympathy. It's so nice though to talk about this at last with someone who understands what its like. Thank you.
Yes I will let you know how I get on.
Hi Soocee67 sorry I'll start again. I'm with Guppy on this one. You shouldn't need to have yet another biopsy isn't 2
enough? If they say no ask why. You do sound you as if could do with some friendly backup or just for some handholding.
Like you I'll really go out with certain friends I have a bridge
and it makes eating painfull. Sorry I've no knowledge of
Bristol I live in beautiful Aberdeen. Good luck!
Hi soocee
I too am like that I do never know what to eat.... things I once could eat or drink I now have to avoid I feel embarrassed too, I tend to only go out with my daughters as I live by myself going through a divorce which is so stressful and I don't discuss this with my work colleagues don't think they would understand anyway, have you ever had an abnormal smear when you were younger only I did and was diagnosed with this at the same time although then it had no symptoms what so ever think after the menopause things get worse I was in my 40s when I went through the menopause, try and not worry to much I know it's hard but the stress doesn't help, do you have any family for support.
Thank you for your support, sorry to hear that you're going through a lot of stress in your private life. It can't help. I do have a supportive family. My daughters are amazing. The men in my family think they are but being told there is no point worrying discourages me from talking about my fears
Have you ever had an abnormal smear test when you were younger soocee
Well I had my appointment. It was a very long day. 2 hours each way and more than 2 hours in the Oral medicine clinic. They wanted me to have a further biopsy. They were very kind and gentle. I came home with a steroid mouthwash, steroid paste and long term low dose antibiotics. Has anyone had these for OLP? Also an appointment for the biopsy which I had on Friday. It wasn't pleasant and I couldn't stop shaking but the doctors were amazing at pain control. I now have 2 wounds in my mouth which are very sore. Results on the 15th of December.
So once more a waiting game. I need to get my stress levels under control. I am grateful for this group as I don't feel so alone.
Well good luck to you Soocee67. Do not know what else to say except (again) why so many biopsies?
Hi there,
I so sorry to hear of the brutal manner in which the doctor took your biopsy. Doctors told me I had OLP 3 years ago. They did not take a biopsy then as they said the symptoms were classic signs. I dont know why they are repeatedly taking your biopsy. Once established its done with.
Currently am on a replase and my lips are raw and inside the mouth is a bit better I think. Steroid clears off the OLP for me, which now the doctor is referring to as mucosal OLP. I was treated in New Zealand when I was there, Then in Australia and now in India.
I developed steroid related complication like diabetes and now the same has almost subsided. I am now on a steroid twice a week plus on an immunosuppressant daily till my lip heals.
Hope you get relief soon.