The Dermatologist has been the most helpful for me. The Gynecologist prescription was a topical hormone which was a net neutral. Since we only comprise 1% of the population it is not surprising that it takes us so long to find the physician that knows and cares about L S. My effective treatment is also Clobetazol Ointment.
If you have postmenopausal vaginal lining problems that I believe contributes to the stinging and burning issues and just general uncomfortableness. Lack of estrogen will also cause that dry feeling. So sometimes getting a script for Premarin or Estragyn (may have the name not quite right) and applying externally may help. Premarin is scented so go with the latter.
I am so sorry to hear of your problem. I have it too. Was diagnosed 2 years ago. I did the same thing you did. It was in July and the grandkids were here for outdoor adventures when it hit me. I thought it was a bad UTI so I stopped in that the local drugstore clinic for a test and a quick fix. Wrong. No UTI. Long story short, I saw my gyn. She diagnosed it by saying, "I'm sorry to tell you that you have another autoimmune disease called Lichen Sclerosis." Prescribed the Clobetasol and that has held me. I use a dab when I feel a little warning. I'm glad to hear that Aquaphor can help too. It is very important to take care of yourself in this regard and finding the right doctor who is knowledgeable about LS and other autoimmune diseases. Since this this an AI disease, there is a pretty strong chance you may have other AI diseases to develop. Best wishes.
Thank you cinnamon215. 🙂 It can be a battle at times keeping the Lichen Sclerosis under control. I actually have a long list of autoimmune and other disorders. Best wishes to you as well. 🙂
How do I find a doctor in my area who has experience treating lichen sclerosus? My OBGYN did a biopsy and diagnosed me with LS about a year ago. She is very nice, but does not know a lot about treatment. My dermatologist does not seem to know much about treating LS, and didn't examine me. He told me that it was bad to use clobetasol and said to switch to Elidel, which caused immediate irritation. I live in Honolulu. Thank you.
I’m wondering if you have found a physician for your lichen sclerosis @honolulukk ? It can be so uncomfortable and irritating! Please don’t let it go untreated too long
Hi, just joined this group, I have been diagnosed with LS for little over a year. Using dermovate cream, and a HRT cream at the moment. And for a week been put on Amitriptyline tablets as my condition not been to good. Has anybody else been put on these tablets for LS and has it helped.
Hello @iduna10, Welcome to Mayo Clinic Connect. There is another discussion on Connect where your post will receive more visibility and you can learn what treatments help other members that share your symptoms. I'm tagging our moderator @lisalucier to see if we should move your post to the discussion here:
Hi, just joined this group, I have been diagnosed with LS for little over a year. Using dermovate cream, and a HRT cream at the moment. And for a week been put on Amitriptyline tablets as my condition not been to good. Has anybody else been put on these tablets for LS and has it helped.
Hi, just joined this group, I have been diagnosed with LS for little over a year. Using dermovate cream, and a HRT cream at the moment. And for a week been put on Amitriptyline tablets as my condition not been to good. Has anybody else been put on these tablets for LS and has it helped.
Hello, @iduna10, and welcome to Mayo Clinic Connect. Glad you have joined this community and discussions on lichen sclerosis. I have moved your post here to an existing discussion called "Treatments for Lichen sclerosis besides steroids" so that you can meet others talking about LS, specifically if they have been on amitriptyline and whether it has helped. Please meet @johnbishop@becsbuddy@tamarrillo2@sue225@maryz and others here.
Have you noticed any effects yet of the new medication, iduna10?
Hi, just joined this group, I have been diagnosed with LS for little over a year. Using dermovate cream, and a HRT cream at the moment. And for a week been put on Amitriptyline tablets as my condition not been to good. Has anybody else been put on these tablets for LS and has it helped.
@iduna10 is the amitriptyline being prescribed to alleviate the discomfort and pain (an old tricyclic antidepressant used for many conditions)? According to my gynecologist I am showing improvement which has come from religiously using the clobetasol (the steroid cream). The dermovate should work for you. I also just started using an estrogen cream.
Yes sue225, it was prescribed to help with symptoms of LS, as I was already using the steriod dermovate, but had to recently up it to every day twice for 10 days as the 3 times a week wasnt working,the burning and itching caused alot of discomfort. Doctor hopes it may help with that, some muscle aches and waking up to go for pee every night sometimes twice per night, has been more earlier into this problem. Been taking the amitriptyline for 12 nights now, first 4 nights were great, then by 7th night started to feel quite off, they say any side effects should wear off soon, so hoping things may settle soon. Not sure if doctor wants me to carry on with tablets for a longer period or just for the 6-8weeks.
@iduna10 I took amytriptiline years ago for dealing with irritable bowel symptoms. I remember sleeping like a log when I was on it. There was a slight hangover effect in the mornings. After about a year or so I stopped taking it.
The steroid creams do cause burning and/or stinging I find. Although, I seem to be tolerating the clobetasol better now than in the past. Sorry I didn't listen to the doctor and persist in using it years ago instead of letting it get worse.
@iduna10 I took amytriptiline years ago for dealing with irritable bowel symptoms. I remember sleeping like a log when I was on it. There was a slight hangover effect in the mornings. After about a year or so I stopped taking it.
The steroid creams do cause burning and/or stinging I find. Although, I seem to be tolerating the clobetasol better now than in the past. Sorry I didn't listen to the doctor and persist in using it years ago instead of letting it get worse.
Sue225 it was'nt the steriod cream causing the burning, it actually helped but just did'nt last lo ng once I left the days off In between..I'm also taking g hrt cream twice a week. My worry is that I seem to have more flare ups than i probley should be having. And tend to rely on the steriod to much. Were you taking the one 10mg tablet amitriptyline every night or 2. At moment am sticking to one.
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If you have postmenopausal vaginal lining problems that I believe contributes to the stinging and burning issues and just general uncomfortableness. Lack of estrogen will also cause that dry feeling. So sometimes getting a script for Premarin or Estragyn (may have the name not quite right) and applying externally may help. Premarin is scented so go with the latter.
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1 ReactionThank you cinnamon215. 🙂 It can be a battle at times keeping the Lichen Sclerosis under control. I actually have a long list of autoimmune and other disorders. Best wishes to you as well. 🙂
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2 ReactionsI’m wondering if you have found a physician for your lichen sclerosis @honolulukk ? It can be so uncomfortable and irritating! Please don’t let it go untreated too long
Hello @iduna10, Welcome to Mayo Clinic Connect. There is another discussion on Connect where your post will receive more visibility and you can learn what treatments help other members that share your symptoms. I'm tagging our moderator @lisalucier to see if we should move your post to the discussion here:
> Groups .> Autoimmune Diseases > Treatments for Lichen sclerosis besides steroids
-- https://connect.mayoclinic.org/discussion/lichen-sclerosis-anyone/
Has the Amitriptyline helped some? Have you had a chance to discuss the drug with your doctor about how long it takes before it helps?
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1 ReactionHi, just joined this group, I have been diagnosed with LS for little over a year. Using dermovate cream, and a HRT cream at the moment. And for a week been put on Amitriptyline tablets as my condition not been to good. Has anybody else been put on these tablets for LS and has it helped.
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Like -
Helpful -
Hug
2 ReactionsHello, @iduna10, and welcome to Mayo Clinic Connect. Glad you have joined this community and discussions on lichen sclerosis. I have moved your post here to an existing discussion called "Treatments for Lichen sclerosis besides steroids" so that you can meet others talking about LS, specifically if they have been on amitriptyline and whether it has helped. Please meet @johnbishop @becsbuddy @tamarrillo2 @sue225 @maryz and others here.
Have you noticed any effects yet of the new medication, iduna10?
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Helpful -
Hug
2 Reactions@iduna10 is the amitriptyline being prescribed to alleviate the discomfort and pain (an old tricyclic antidepressant used for many conditions)? According to my gynecologist I am showing improvement which has come from religiously using the clobetasol (the steroid cream). The dermovate should work for you. I also just started using an estrogen cream.
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Like -
Helpful -
Hug
2 ReactionsYes sue225, it was prescribed to help with symptoms of LS, as I was already using the steriod dermovate, but had to recently up it to every day twice for 10 days as the 3 times a week wasnt working,the burning and itching caused alot of discomfort. Doctor hopes it may help with that, some muscle aches and waking up to go for pee every night sometimes twice per night, has been more earlier into this problem. Been taking the amitriptyline for 12 nights now, first 4 nights were great, then by 7th night started to feel quite off, they say any side effects should wear off soon, so hoping things may settle soon. Not sure if doctor wants me to carry on with tablets for a longer period or just for the 6-8weeks.
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Like -
Helpful -
Hug
1 Reaction@iduna10 I took amytriptiline years ago for dealing with irritable bowel symptoms. I remember sleeping like a log when I was on it. There was a slight hangover effect in the mornings. After about a year or so I stopped taking it.
The steroid creams do cause burning and/or stinging I find. Although, I seem to be tolerating the clobetasol better now than in the past. Sorry I didn't listen to the doctor and persist in using it years ago instead of letting it get worse.
-
Like -
Helpful -
Hug
1 ReactionSue225 it was'nt the steriod cream causing the burning, it actually helped but just did'nt last lo ng once I left the days off In between..I'm also taking g hrt cream twice a week. My worry is that I seem to have more flare ups than i probley should be having. And tend to rely on the steriod to much. Were you taking the one 10mg tablet amitriptyline every night or 2. At moment am sticking to one.
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Like -
Helpful -
Hug
1 Reaction