Oral Lichen Planus :: Erosive Variety
Nov 8, 2015
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
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has anyone had or have burning mouth syndrome before having the Oral lichen planus?
i had the BMS about 6-7 years before getting OLP.
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I think I have Oral Lichen Planus but I can't get a doctor to confirm it. I have had mouth sores in my cheek area since 2009 and now my gums are very red and inflamed and have been told that I have white lines on my inside cheek area. When I go to a dentist to have my teeth cleaned, I am always turned away because they don't like the looks of my mouth sores. In 2013 I had doctor swab my mouth and send for testing and also did blood work but was told nothing showed up. I think she was looking for bacterial infection. In the mean time, I continue with a very sore mouth.
I have a hard time eating anything because the sores are next to my bottom back teeth so eating irritates the sores a lot at night I sometimes bite the area with sores due to swelling so they pretty much never heal.
I recently went to a new dentist and she too wouldn't work on my teeth but she gave me details as to her concerns and told me to get checked for an Auto Immune disorder. I have since been to a doctor and had blood taken to check for that and then they sent me to ENT. He mentioned Oral Lichen Planus which was the first time I have heard of it. He wants to do a biopsy and then he mentioned a steroid rinse.
I also researched OLP and I have all the symptoms listed so I just don't understand how going to doctors since 2010 about the mouth sores, no one can figure it out? Am I finally heading in the right directions for diagnosis? I scares me that it has been left un treated for 5 years when I read that sometimes those with OPL can lead to mouth cancer.
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My son was diagnosed with OLP when he was 8..... But his mouth ulcers started when he was 3! He's 10 now. He has good weeks and he has Horrible weeks. No one has been able to help us relieve his pain. We do have some meds prescribed but none are miracle drugs (I know that doesn't exist. . I just wish it did). The medicine prescribed to him is Methotrexate 2.5 mg tablet - 6 at a time once a week. Also he's to take folic acid with this med. He's not started this yet because he must have blood work done routinely since there is a chance this med will effect his liver .... And he's terrified of needles. He uses Chloraseptic mouth spray very often for the pain. He misses school very often. He sometimes has "mystery fevers" and feels just awful inside. He gets bad headaches. I read on one thread that someone mentioned an OTC med for thrush and an enzyme for candida. I think I might try that for him. Does anyone have any other suggestions for me? My sweet boy is in pain and has been for so long and I'm worried that his childhood is being negatively impacted by all these mouth ulcers.
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I have been struggling to have sex with my husband for almost a year now. I have excruciating pain every time we try.
He is a great person and understanding but there is no hiding the fact that it is a struggle for him (and me) that we are not able to have sex. The pain is incredible and as much as I try to grin and bare it, it is impossible to achieve penetration.
I was diagnosed with LS just a week ago after a biopsy and have been given dermovate to use once a night for 4 weeks. Had anyone used this and seen an improvement with vaginal pain? How long did the medication take to work?
Has anyone had severe sexual pain and overcome it after medication?
I'm desperate, I'm 26 and can't spend the rest of my life not having sex. What if I would like children later?
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My 1st laser treatment was unsuccessful so i went to see an oral surgeon who specializes in laser ablation on soft oral tissues This time the procedure was much more invasive and treated like an actual surgery. The doctor removed the top 3 layers of epithelial tissue off the side of my tongue where the OLP was I he went much deeper than my 1st doc). I had the procedure friday and am still in considerable pain and discomfort. I am unable to speak and chew so i have been pretty much drinking my meals through a straw. Thankfully i have a supportive girlfriend who has been cooking and pureeing all the food for me I went to the doc today for a post-op exam and he said it was healing properly. I have been taking vitamin C, D, zinc, glutamine and lysine for immune support and to help heal the tissue. Right now my tongue looks like a mess but i am hoping it heals up and the OLP is a thing of the past. Unfortunately i had to cancel my weekend travel plans and missed my good friends wedding in the process, so i've been a bit stressed and sad.
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the first oral surgeon i went to recommended it and i am now thinking this may be a good idea. I believe its similar to a scraping where it stimulates new cell generation and heals the damaged tissue.
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I Am only the merry go round of LP. Off prednisone 5 days and it comes back in my mouth hands and vulva. I was trying and still am trying a shot of wheatgrass every am, probiotic yogurts and super 8 probiotic capsules. Have been doing this for three weeks and symptoms got worse so doctor has put me on steroids again...20mg as opposed to 40 mg the last time..I have been a naughty girl and am not taking them as I am trying to lose the stone in weight I put on during my last course.
I have read so many posts and now think if there id a connection between candida and Lp. I am thinking of going gluten free.....does this work?
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I want to start a thread that concentrates on anything that helps - or anything tried that doesn't help.
I've been prescribed Dapsone, Allegra and Advantan - no improvement after 14 days
I've read that Ultraviolet B was completely successful for 70% of patients after 10.9 weeks and I can email that study to anyone interested. Ultra Violet B is provided by the sun but one person on this forum reported getting worse after spending time in the sun.
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I have been going through a second flare up and dermovate is not working. Now been given protopic as not responding to steroid creams. I need advise on the itching which is literally driving me mad and the lack of sleep is interfering with my work now any advise on creams, diets etc!
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I have just been diagnosed with LP vulvar, it has also affected my breasts and small patches on my torso. I've had it for a long time and just didn't know what it was, with flare ups that come and go- everywhere but the vulva, which has been rather constant and suddenly got worse about a month ago. Been in agony with the vulvar part for the past week because taking antibiotics for an ear infection meant severe thrush also got thrown into the mix.
The doctor said it was unusual for someone of my age to suffer from lichen planus (I'm 26), so I have to go to a dermatologist for their review. I'm also an IBS sufferer, I noticed on a lot of other posts that many people that mentioned LP/LS also have IBS.
I've been given Trimovate but, so far, the only thing that stops the itching long enough for me to get to sleep is Vagisil, which I'm worried will cause problems long-term even though it brings temporary relief.
I'm dreading going back to work tomorrow and don't know when/whether I'll get my sex life back with my amazing boyfriend. Feeling really rubbish
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I have got lichen planus on arms very bad, legs, vulva, oral and now starting on my chest. I have used cetraben, dermovate, dermal, doublebase cream, hydrocortisone, calamine lotion, aqueous cream..my GP been excellent.
Also Tramalgin, betnovate for below and am now tearing my hair out with sleepless nights with itching.
I go to work like a zombie and it's so embarrassing having to scratch, they say the monkeys here as a joke.
This has gone on for 6months nearly...am waiting to see the dermatologist. I had a vulvar flare 4 years ago and was ok up until early this year.
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I was talking to a lady today who has advised she is a distributor and she said it works on inflammation and helps improve skin diseases.
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The first twenty years of my life had a variety of chronic torture & abuse. As a child my home life constantly shifted and alcohol, physical and mental violence was the order of the day. I felt wholly unworthy as a person to be alive. It drove me into drug addiction for eight years. Within the first year, the dealer and his friends cornered me into the back of his shop and raped me, protracting the incident over three days. My addiction exploded and it forced me into dealing with the rapist for a length of time after the incident occurred. I did not develop PTSD at the time, my drug addiction was becoming life threatening and I spent the next twelve years in and out of rehab until I finally one day carved out a functional routine for myself. Life became better, I worked in a shop, got creatively involved and got married (Although I was never able to fall pregnant). Years later we decided to immigrate to Australia. My husband collided with the culture from day one. Within a short period of time he became manic. We had just given everything up and returning back would be security suicide I felt, so I found work, moved us out. My husband tormented me for the next two years until it exploded one afternoon with police coming to arrest him. In the last days of my time in Australia I worked abnormally long hours to pay migration costs, as I wouldn't be able to, once returning to South Africa in an unemployed state.
Landing back in S.A I was hit with the chronic diabetic condition of my mother, who had not gone to one doctor about her condition. I dug in to get her health back to a manageable level for almost a year before I found employment and finally moved out. The nightmare began then. After a court order against my now ex-husband, I landed in a strange town, with new work, where no-one knew me.
Nightmares began to pour into my sleep about the rape that happened over twenty years ago. Functionality levels became dangerously low. I sought help, but without any real finances I was thrown into a system of waiting and small bits of attention here and there. Being alone also didn't help. I had already lost my first job, after flashes bled into my waking hours. A friend came from Australia, three years after my landing back here and saw my condition. These episodes have already taken on a form of torture that has made me terrified to talk about them. Somehow one of the men who raped me, detached themselves into a character that would invade my mind throughout the day and talk to me, telling me of new ways to torture me, that I will never be okay again, that I will always be stuck here. My friend is adamant about me leaving work and seeking help...I am terrified that I will be put away into an institution.
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When I received my diagnosis a month or so ago, I spent a lot of time reading this forum and learned an overwhelming amount of information. One post that stood out was someone who had managed to somewhat reverse their fusion with a baking soda spray treatment. I can't find that post, or remember what thread it was posted on, and I'm hoping someone can point me in the right direction. If there is anyone else who has managed to reverse their fusion.
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just been reading some of your comments and diet was mentioned, I try to have a healthy diet , don't eat a lot of spicy foods, I always buy fresh veg and only eat fruit like bananas that don't have much acid in. I must admit to having a sweet tooth and do like sweets and I have noticed more flare ups if I have lots of sugary foods. Try to keep my sweetie intake to a minimum which is hard because I think if you suffer from LS you need the occasional treat to cheer you up.. Maybe my fairly bland diet is helping to keep the LS stable
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My Mother suffers from Lichen Planus, which I know is not exactly the same as Lichen Sclerosus. She has recently found urinating really painful. She has today found a convenient way to make things a bit easier. She fills a sports drinks bottle with warm water, and squirts this against herself when she urinates. It is soothing and also cleanses the area each time. hope this may help some people?
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I was diagnosed last year. I also had an early menopause as a teenager so we are looking into IVF to have a baby. I am struggling to find info on how LS affects pregnancy and birth if we are successful? Also thinking that the steroid cream can't be good for pregnancy?
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I have questions about the clitoris being buried. My first LS breakout was about 7 months ago. Have had a couple less severe ones since. I've gotten tremendous relief and healing with the hydrogen peroxide/saline spray, and Caprylic MCT oil (derived from coconut oil) Didn't even know what the heck it was until I found this forum. Have not been to doctor but will make an appt. Noticing as I examine myself that area that my clitoris may be "disappearing" behind folds. I've been reading on this forum and wonder: does the steroid cream reverse the fusion a bit? Enough to free it again?
I had a friend who had a procedure to "free" her clitoris -- not an LS sufferer, but her architecture was such that it was covered up & couldn't climax with her husband all their married years. She finally did some research and found a doctor who specializes in this, and he said "you're 100% covered up". With a minor procedure, she is now normal down there and able to be satisfied with her partner.
I was just wondering if the steroid cream or perhaps this procedure could restore my clitoral area as well. It's been such a short time and my sex life was very satisfying just months ago! I'm 53, btw.
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I'm going to have a biopsy done in few weeks time. I was advised by the dermatologist to get some metope (sp?) gel and apply it 1/2 hour before the procedure. However, I look at the instructions and you have to put an air tight covering over the area once you've applied the gel - something like cling film I think. But how will that work on my fanjo?
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have any ladies had the CO2 fractional laser for LS? The reason I ask is that my dermatologist has finally given me the name of the laser they have suggested for my treatment as I'm struggling with the steroids/HPV warts cycle. They have suggested having the CO2 fractional laser followed a couple of hours later by PRP treatment. The dermatologist said they see the best results with ladies who have this combination on the same day.
over this last week my left labia minor has disappeared 😟 Completely and I have struggled to keep the itch at bay. Although the white patches have diminished. in the last week I had to use the Betnovate but after a day the itch/pain was so bad and not subsiding, that I used the dermovate, this I think was the only thing that helped with the itch eventually. But as I struggle to use these creams I have to be very careful as they induce warts.
Hence the doctor has suggested I undertake the CO2 laser and PRP combination next week.
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