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First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!
Replies to "First of all, thank you for being so thorough with the process that has worked for..."
Hello, @mrsdavis1 That all sounds so difficult! I’m so glad you found MayoClinicConnect. I’m a nurse and I agree, doctors don’t know everything. I read an article that said that they never learned about autoimmune disease because most are too new. Mine, included. Are you anywhere near the state university medical school? They have excellent doctors . One woman found a specialist dentist who diagnosed her. I sure hope you find something! Try large medical centers, medical schools, and rheumatologist. And look thru all the previous posts on OLP. Everyone has such good ideas. Be sure to let us know how you’re doing
Sorry you are going through so much. I am new to this group but wanted to let you know my experience with the Rx compounds. Walgreens wanted $200 for a small bottle. I ended up taking it to a lsmall local pharmacy and the price was 75% .
Hello-I can hear the pain in your words and feel so badly that you are not being heard by doctors. I was diagnosed with oral and vaginal about 6 months ago. My dentist initially mentioned it and referred me to a periodontist in order to try to bring my gums to health. He did the biopsy for diagnosis and then referred me to a dermatologist who is a specialist in LP. (My gyno. said there was no sign of LP down there, but the specialist said, yes in fact it is there as well). I am using clobetesol gel orally 4x week at this point; originally it was every night plus minocycline. I also use a gel vaginally and I swish with an anti-rejection medication 4x week as well. I have seen some difference in my mouth-the extreme redness seems better-I am trying to figure out what foods or liquids affect my mouth. My tongue often feels as if it has been scraped. Stress is supposed to bring it on and I am stressed at the possibility of oral cancer developing as I have had two areas on my body with squamous cell carcinoma removed in the past. I am insulted by the "geriatric" reference! You are so young and with four children-so very busy! I hope you find relief soon.
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It is for sure a very challenging and sometimes when we have the pain of ELP it brings that tearful frustration. It seems to be considered a hysterical women’s disease. There was an article published in the New York Times this month. Here is the link. https://www.nytimes.com/2019/05/12/well/live/a-little-known-skin-disease-that-can-disrupt-peoples-sex-lives.html. Information in this article could well be what ended my marriage. These rare auto immune problems seem to be a mystery even to the medical community. At least Mayo provides a forum to learn what may work. If it worked for others! If the link I provided is blocked just search for the New York Times article from 5/12/18 an article by Jane E Brody. Heading is A Little-known Skin Disease That Can Disrupt People’s Sex Lives. It is a provocative but true statement but so much more. People have been responding with their medical experiences. Good luck. maryz