John, Volunteer Mentor | @johnbishop | Jan 29, 2023
Hello @petlover777, Welcome to Connect. I wasn't able to find other members who have posted about esophageal lichen planus but hopefully your discussion will help bring in members to share their experience with you. While we wait I thought I would share this article which may help answer questions you might have.
"Esophageal lichen planus is a rarely reported manifestation of lichen planus, presenting itself commonly in middle-aged women, with symptoms such as dysphagia. "
-- Esophageal lichen planus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516088/.
Do you mind sharing what symptoms cause you the most trouble?
@petlover777 Wow! Never heard of this one! I have had oral and vaginal lichen planus which is bad enough when I have a relapse, but I can imagine esophageal lichen planus would be worse! 😯 I feel for you!
I have had both skin and oral lichen planus. In addition I have developed a Zenker's diverticulum which has been repaired but I still have a great deal of trouble swallowing and my voice is frequently very rough and croaky.
Hi
I have LP in my esophagus, tear ducts, mouth and vagina. Esophagus is dialated three times and now just got referred to get some treatment for the inflammation. Tear ducts have Jones tubes, glass tubes, now to function. Have a hard time eating and it is painful.
Colleen Young, Connect Director | @colleenyoung | Feb 4, 2023
Welcome @jsbell1940 and @drottningomma. I'm tagging @petlover777 to make sure they see your responses and to connect with others who have experienced esophageal lichen planus.
Has anyone worked with a speech pathologist to help with swallowing issues?
Welcome @jsbell1940 and @drottningomma. I'm tagging @petlover777 to make sure they see your responses and to connect with others who have experienced esophageal lichen planus.
Has anyone worked with a speech pathologist to help with swallowing issues?
No. I have had help from an ear-nose and throat surgeon to have dialations done and now I'm referred to a gastro medic to get some medications and for them to treat the narrowness further down in my esophagus that that surgeon could not reach.
I have been diagnosed with Esophageal Lichen Planus 10 days ago. I'm 63yrs. old and have struggled with discomfort in my esophagus and mouth which has made it very hard to eat. I have lost over 25lbs. in the past four months. The lack of nutrition brought me into the hospital due to a critically low sodium level. I was very sick. I initially had oral thrush from two rounds of antibiotics. The discomfort in my esophagus and mouth didn't go away although the thrush did after several weeks of medications in an attempt to treat it. Thus I was referred to a gastroenterologist who diagnosed ELI after endoscopic exploration and biopsies. I will be seeing an Ear, Nose and Throat specialist soon for an evaluation also.
I have Hashimoto's Auto-immune thyroiditis with hypothyroidism that was diagnosed 30 years ago. I have been on synthetic thyroid hormone replacement since that time.
The ELP I have does become very painful at times. Toothpaste stings my mouth etc..... Carbonated beverages will sting in my esophagus. I cannot tolerate anything spicy. Citrus drinks etc...cause a lot of discomfort and irritation.
I am struggling. This is frightening!
I have been diagnosed with Esophageal Lichen Planus 10 days ago. I'm 63yrs. old and have struggled with discomfort in my esophagus and mouth which has made it very hard to eat. I have lost over 25lbs. in the past four months. The lack of nutrition brought me into the hospital due to a critically low sodium level. I was very sick. I initially had oral thrush from two rounds of antibiotics. The discomfort in my esophagus and mouth didn't go away although the thrush did after several weeks of medications in an attempt to treat it. Thus I was referred to a gastroenterologist who diagnosed ELI after endoscopic exploration and biopsies. I will be seeing an Ear, Nose and Throat specialist soon for an evaluation also.
I have Hashimoto's Auto-immune thyroiditis with hypothyroidism that was diagnosed 30 years ago. I have been on synthetic thyroid hormone replacement since that time.
The ELP I have does become very painful at times. Toothpaste stings my mouth etc..... Carbonated beverages will sting in my esophagus. I cannot tolerate anything spicy. Citrus drinks etc...cause a lot of discomfort and irritation.
I am struggling. This is frightening!
I have lichen sclerosis. If you haven’t already been told these are autoimmune conditions.
I have found that if I treat my autoimmune with high nutritional food and drinks my condition improved. It is very hard . Kale , spinach, chia seeds, flax seeds . I’ll look up the name of the functional medicine Dr I believe in .
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Hello @petlover777, Welcome to Connect. I wasn't able to find other members who have posted about esophageal lichen planus but hopefully your discussion will help bring in members to share their experience with you. While we wait I thought I would share this article which may help answer questions you might have.
"Esophageal lichen planus is a rarely reported manifestation of lichen planus, presenting itself commonly in middle-aged women, with symptoms such as dysphagia. "
-- Esophageal lichen planus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516088/.
Do you mind sharing what symptoms cause you the most trouble?
-
Like -
Helpful -
Hug
1 Reaction@petlover777 Wow! Never heard of this one! I have had oral and vaginal lichen planus which is bad enough when I have a relapse, but I can imagine esophageal lichen planus would be worse! 😯 I feel for you!
I have had both skin and oral lichen planus. In addition I have developed a Zenker's diverticulum which has been repaired but I still have a great deal of trouble swallowing and my voice is frequently very rough and croaky.
Hi
I have LP in my esophagus, tear ducts, mouth and vagina. Esophagus is dialated three times and now just got referred to get some treatment for the inflammation. Tear ducts have Jones tubes, glass tubes, now to function. Have a hard time eating and it is painful.
-
Like -
Helpful -
Hug
1 ReactionWelcome @jsbell1940 and @drottningomma. I'm tagging @petlover777 to make sure they see your responses and to connect with others who have experienced esophageal lichen planus.
Has anyone worked with a speech pathologist to help with swallowing issues?
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Like -
Helpful -
Hug
1 ReactionWhat are typical symptoms?
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1 ReactionNo. I have had help from an ear-nose and throat surgeon to have dialations done and now I'm referred to a gastro medic to get some medications and for them to treat the narrowness further down in my esophagus that that surgeon could not reach.
-
Like -
Helpful -
Hug
2 ReactionsI have been diagnosed with Esophageal Lichen Planus 10 days ago. I'm 63yrs. old and have struggled with discomfort in my esophagus and mouth which has made it very hard to eat. I have lost over 25lbs. in the past four months. The lack of nutrition brought me into the hospital due to a critically low sodium level. I was very sick. I initially had oral thrush from two rounds of antibiotics. The discomfort in my esophagus and mouth didn't go away although the thrush did after several weeks of medications in an attempt to treat it. Thus I was referred to a gastroenterologist who diagnosed ELI after endoscopic exploration and biopsies. I will be seeing an Ear, Nose and Throat specialist soon for an evaluation also.
I have Hashimoto's Auto-immune thyroiditis with hypothyroidism that was diagnosed 30 years ago. I have been on synthetic thyroid hormone replacement since that time.
The ELP I have does become very painful at times. Toothpaste stings my mouth etc..... Carbonated beverages will sting in my esophagus. I cannot tolerate anything spicy. Citrus drinks etc...cause a lot of discomfort and irritation.
I am struggling. This is frightening!
-
Like -
Helpful -
Hug
2 ReactionsWelcome @peanut4777, @sadea0208, and @peanut4777. I'm tagging @petlover777, @jsbell1940 and @drottningomma who have also posted in this discussion and may have some experience to share.
While we wait for members to share their experience, I thought you might find the following references helpful:
-- Oral Lichen Planus Fact Sheet: https://www.gofsindy.com/files/2016/08/Oral-Lichen-Planus-Fact-Sheet.pdf
-- Esophageal lichen planus: Current knowledge, challenges and future perspectives: https://www.wjgnet.com/1007-9327/full/v28/i41/5893.htm.
Do you mind sharing what your biggest challenge is with esophageal lichen planus?
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Helpful -
Hug
1 ReactionI have lichen sclerosis. If you haven’t already been told these are autoimmune conditions.
I have found that if I treat my autoimmune with high nutritional food and drinks my condition improved. It is very hard . Kale , spinach, chia seeds, flax seeds . I’ll look up the name of the functional medicine Dr I believe in .
-
Like -
Helpful -
Hug
2 Reactions