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Treatments for Lichen sclerosis besides steroids

Posted by ret18 @ret18, Jan 31, 2018

Anything out there that works other than steriods

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sue225 | @sue225 | Dec 12, 2020
In reply to @joybringer1 "I concur. LS must be treated although it always comes back. It could be worse without..." + (show)
Profile picture for joybringer1 @joybringer1

I concur. LS must be treated although it always comes back. It could be worse without treatment. This is one of those hateful diseases of "no cause, no cure." I use halebetasol, but will ask my gynecologist next week about switching to clobetasol. I did a bit of reading and one of the sites said halebetasol lasts longer after applied. I read about foods to avoid if you have lichen sclerosis. It is a long list and I eat many of the foods. I am not ready to change my diet. I eat what we have and mostly what my husband cooks. My gynecologist is the fourth one since feeling this pain many years ago. I trust her and will stay with her. I use a compounded ointment to numb the pain. Right now I am using haebetasol twice a day. Maintenance is twice per week and twice per week of Premarin. Didn't one of your doctors tell you to use the clobetasol after confirmed LS? I have appointments with my gynecologist every 3 months and I never make it to that time before I need to see her again. We always keep that as my back-up- appointment and I will be using that next week. Good luck to all of you who are suffering this dreadful disease. I have never hear of the spots on both sides of your torso. Please ask your doctor what to do! @joybringer1

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Yes, my gynecologist correctly diagnosed LS twenty five years ago. The last steroid creams all caused stinging resulting in sporadic use. I tried several. Big mistake on my part. Initially, LS didnt bother me. It was diagnosed during annual exam/pap smear. Should have persevered. Damage done. I use faithfully clobetasol now.

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joybringer1 | @joybringer1 | Dec 13, 2020
In reply to @misssassy "We are all so different. And I can only hope I can give you hope though..." + (show)
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We are all so different. And I can only hope I can give you hope though I have no solutions and no suggestions. I was diagnosed by an experienced gynecologist and treated accordingly for LS. For some unknown reason my LS went away. I had it for about a year and a half. . It was awful. And then it went away. My only treatment was Clobetasol . I knock on wood scared to death it will return because I am claiming to be free of it. But the date on my last Clobetasol prescription was March 2019. So sometime after that it went away. I am 79 and have not been sexually active for many many years if that might be questioned. I have no idea what made the change. The only changes in my lifestyle and pattern during that period of 2017 to 2019 was I lost 35 lbs and was primarily on a salt free diet. Not low salt But as salt free as I could get it ! (Salt triggers my appetite is why I chose this to lose weight. ) In no way whatsoever am I suggesting a low salt or salt free diet made the LS change I am just reporting some of the details of my experience. Because I truly don't know of any thing that might possibly contribute to the LS going away. I just hope this can give you some hope !!! I wish you the best.

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How fortunate you are to have no more lichen sclerosis. I don't think I have ever heard such a good story. I hope you will continue to be free of this dreadful disease. I was diagnosed many years ago (after looking for a gynecologist and finding one on my fourth try) who knew anything about this. I have given up hope for ever recovering from this. I make appointments for three months after each visit. My doctor is very busy, but she always sees me when I call and say something is worse. I never make it to the three months appointment before I have an emergency appointment. We always keep the 3-month appointment on the books. I survive with halobetasol and a compounded cream that numbs my inflamed parts. It does sting when first applied, but then I have some relief for about 1 1/2 hours. @joybringer1

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ronjon27 | @ronjon27 | Dec 19, 2020

Does everyone else have to see the GYN once a year for a follow up?

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Erika | @erikas | Dec 28, 2020
In reply to @ronjon27 "Does everyone else have to see the GYN once a year for a follow up?" + (show)
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Does everyone else have to see the GYN once a year for a follow up?

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@ronjon27 You've been a member of Mayo Clinic Connect since 2017 but this is your 2nd post. I'd like to welcome you back to Connect.

You asked if others see their GYN one a year for follow up. I'm assuming that you are diagnosed with lichen sclerosis, you see your provider once a year, and you are wondering if this is typical. Did I get that right?

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joybringer1 | @joybringer1 | Dec 28, 2020
In reply to @erikas "@ronjon27 You've been a member of Mayo Clinic Connect since 2017 but this is your 2nd..." + (show)
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@ronjon27 You've been a member of Mayo Clinic Connect since 2017 but this is your 2nd post. I'd like to welcome you back to Connect.

You asked if others see their GYN one a year for follow up. I'm assuming that you are diagnosed with lichen sclerosis, you see your provider once a year, and you are wondering if this is typical. Did I get that right?

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I have an appointment with my GYN every 3 months owing to my lichen sclerosis. I rarely can last until the next 3-month appointment so see her more frequently. She is very busy, but her nurse will always find a spot for me to see her if I call and say I am in great need of seeing her. Of all my medical conditions, this is the worst! I understand there is no cure and thus, no hope of shaking this. I have had it for years. Sometimes the diagnosis is "just" cellulitis (that one landed me in the hospital) or vaginitis or a yeast infection. Ah well, I am still alive and thankful for that. @joybringer1

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ronjon27 | @ronjon27 | Dec 28, 2020
In reply to @erikas "@ronjon27 You've been a member of Mayo Clinic Connect since 2017 but this is your 2nd..." + (show)
Profile picture for Erika @erikas

@ronjon27 You've been a member of Mayo Clinic Connect since 2017 but this is your 2nd post. I'd like to welcome you back to Connect.

You asked if others see their GYN one a year for follow up. I'm assuming that you are diagnosed with lichen sclerosis, you see your provider once a year, and you are wondering if this is typical. Did I get that right?

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I was diagnosed with lichen sclerosis five years ago. For the past three years I have been symptom free. I have not had to use clobetasol or any other medicine for the past three years. Yet my GYN is having me to come back every year. I thought since there is no longer any noticeable signs that I should not have to be going back every year. When I questioned the dr about it she said she just wants to make sure it does not come back. I feel every two years should be sufficient.

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joybringer1 | @joybringer1 | Dec 29, 2020

Oh lucky you. I will never be free if this disease. I return at least every 3 months. I think I have written something like this already. @joybringer1

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misssassy | @misssassy | Dec 29, 2020

I so wish I knew why mine stopped so I could share it with you and hopefully end yours also ! And I also hope and pray mine won't return. But hopefully my story will serve to give you hope ! And for it to soon go away !

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joybringer1 | @joybringer1 | Jan 12, 2021

At my last visit to my GYN she said my lichen sclerosis is in remission. Why do I still have the burning and stinging? I am beginning to wonder if I might have some nerve damage since I have had this for many years. My labia are still red and swollen and I am still miserable. Does anyone with this disease have a similar problem? If so, could you please tell me what you have done to alleviate the burning/stinging? I still use my compounded mixture to numb the area, but that is only temporary relief. Is there a med that might help? I have an appointment with my PCP next week so I will ask him about this. Thank you for any suggestions provided. Meet the new year, same as the old year. @joybringer1

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Erika | @erikas | Jan 18, 2021
In reply to @joybringer1 "At my last visit to my GYN she said my lichen sclerosis is in remission. Why..." + (show)
Profile picture for joybringer1 @joybringer1

At my last visit to my GYN she said my lichen sclerosis is in remission. Why do I still have the burning and stinging? I am beginning to wonder if I might have some nerve damage since I have had this for many years. My labia are still red and swollen and I am still miserable. Does anyone with this disease have a similar problem? If so, could you please tell me what you have done to alleviate the burning/stinging? I still use my compounded mixture to numb the area, but that is only temporary relief. Is there a med that might help? I have an appointment with my PCP next week so I will ask him about this. Thank you for any suggestions provided. Meet the new year, same as the old year. @joybringer1

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@joybringer1 You mentioned having an appointment with your PCP. Is that coming up this week or did you already go? If you did go, what was the advice/treatment/outcome?

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