I have had Lichen Sclerosis for over 2 decades now. Started having symptoms shortly after menopause which my gynecologist attributed it to. It took about 10 years to be diagnosed. My dermatologist actually made the diagnosis. Needless to say I changed gynecologists. Today I see both on a regular basis. Due to the late diagnosis I do have scar tissue and have a couple of spots biopsied. For years I have used a compound of Balneol cream compounded with 1% hydrocortisone once to twice daily with Estrace cream a couple of times per week. Of course Medicare doesn't care to pay for any compounds. In the past year I found that Aquaphor 1% seems to work even better. This is over the counter and much less expensive. I also need to use regular Aquaphor in my anal area now, too. This brings me to underwear as all that cream can be a problem. Jockey makes a worry-free moderate or heavy underwear that has worked great. I enjoy taking a spin class or riding my bicycle so I "grease" up and wear the worry-free as it is padded. Everyone is so different but wanted to let you all know what has worked so far for me.
Depends how one defines healthy! No, my skin is not healthy since it was 10 years from onset of symptoms until diagnosis. At least I no longer notice much. I also should have mentioned that Charmin toilet paper with aloe vera has been nice.
I have had Lichen Sclerosis for over 2 decades now. Started having symptoms shortly after menopause which my gynecologist attributed it to. It took about 10 years to be diagnosed. My dermatologist actually made the diagnosis. Needless to say I changed gynecologists. Today I see both on a regular basis. Due to the late diagnosis I do have scar tissue and have a couple of spots biopsied. For years I have used a compound of Balneol cream compounded with 1% hydrocortisone once to twice daily with Estrace cream a couple of times per week. Of course Medicare doesn't care to pay for any compounds. In the past year I found that Aquaphor 1% seems to work even better. This is over the counter and much less expensive. I also need to use regular Aquaphor in my anal area now, too. This brings me to underwear as all that cream can be a problem. Jockey makes a worry-free moderate or heavy underwear that has worked great. I enjoy taking a spin class or riding my bicycle so I "grease" up and wear the worry-free as it is padded. Everyone is so different but wanted to let you all know what has worked so far for me.
Hello @gmabecky1955. You will notice that I have moved your helpful post into an existing discussion on Lichen Sclerosis that @becsbuddy recommended. Thank you for sharing what has worked for you so that others may also be helped.
Did this come as a result of trial and error over time?
Hello @gmabecky1955. You will notice that I have moved your helpful post into an existing discussion on Lichen Sclerosis that @becsbuddy recommended. Thank you for sharing what has worked for you so that others may also be helped.
Did this come as a result of trial and error over time?
Over time. Other general ideas are to use Norwex wash rags which cuts down on using soap. We use their brand of dryer balls. Dreft for infants is our laundry soap. One needs to keep adjusting.
I have had Lichen Sclerosis for over 2 decades now. Started having symptoms shortly after menopause which my gynecologist attributed it to. It took about 10 years to be diagnosed. My dermatologist actually made the diagnosis. Needless to say I changed gynecologists. Today I see both on a regular basis. Due to the late diagnosis I do have scar tissue and have a couple of spots biopsied. For years I have used a compound of Balneol cream compounded with 1% hydrocortisone once to twice daily with Estrace cream a couple of times per week. Of course Medicare doesn't care to pay for any compounds. In the past year I found that Aquaphor 1% seems to work even better. This is over the counter and much less expensive. I also need to use regular Aquaphor in my anal area now, too. This brings me to underwear as all that cream can be a problem. Jockey makes a worry-free moderate or heavy underwear that has worked great. I enjoy taking a spin class or riding my bicycle so I "grease" up and wear the worry-free as it is padded. Everyone is so different but wanted to let you all know what has worked so far for me.
I was told to use MonaLisa Touch Laser. I have done it for 3 years. It is extremely expensive and not cover by insurance. However when I did use steroids, I found using water (spray bottle or portable bidet) to keep urine off skin and using Aquaphor Advanced Therapy Healing Ointment, or aloe Vera & vitamin E help keep it away. But you must be diligent. One time it came back with a vengeance. Steroid injections did help along with mometasome steroid ointment. But when it became bad again, I tried the MonaLisa touch which works but you must do it yearly (maintenance). If i can’t afford it, I will have to back to using steroid ointment. I found after using clobetasol steroid ointment I had to use a less steroid ointment. The aquaphor also protects against urine.
Hey All, hopping in here to get any input on the Mona Lisa Touch, a CO2 laser treatment. My OB recommended it! We’re thinking of dropping the money for it, because as he said, “you can’t put a price on sex.” Haha! @kitten92 I saw in posts that you were getting it! Any results? We’re looking at 2k for 5 treatments.
I spent 15 months trying to get a diagnosis on what was wrong with me, started with pressure then lump that got worse as the day went on and became unbearable. Saw 11 doctors, tests: colonoscopy, 2 cat scans and 2 MRIs- all normal. Finally got into see a doctor that examined me lying down and standing up. She saw the prolapse and thought this would help me. I'm having my last Mona Lisa Touch next month, using creme daily. My procedure was $1000 per treatment - 3 needed - then one per year. Not covered by insurance. Pessary doesn't work for me so it's this or total hystorectomy. I'm better and hoping after the next treatment I'm even better. I do not want surgery at 78 if I can help it.
Good morning @ret18. Several things I can tell you about this disease begin with getting rid of any soaps, laundry soap included that contain dyes and perfumes. These, for me, were true irritants. Keep the area clean and most importantly dry. Also, keep in mind that steroids could thin the skin over time so ask your gynecologist to either give you a mix of topical ointments or find a doctor that specializes in this disease. I started, luckily, with an oncologist who helped me TREMENDOUSLY. Because I carried my disease around, untreated, for so long my skin became paper thin and I had constant fractures of the skin that were very painful and caused scarring. Most recently, I found that CO2 laser therapy can help and it certainly has for me. Please don't hesitate to message me. I'd be happy to help in any way I can. Perhaps I can at least point you in the right direction. Keep in mind, everyone is different and just because something works for one, doesn't necessarily mean it will work for all. ***Keep your head up and I promise you there is help out there!!***
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Depends how one defines healthy! No, my skin is not healthy since it was 10 years from onset of symptoms until diagnosis. At least I no longer notice much. I also should have mentioned that Charmin toilet paper with aloe vera has been nice.
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1 ReactionHello @gmabecky1955. You will notice that I have moved your helpful post into an existing discussion on Lichen Sclerosis that @becsbuddy recommended. Thank you for sharing what has worked for you so that others may also be helped.
Did this come as a result of trial and error over time?
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3 ReactionsOver time. Other general ideas are to use Norwex wash rags which cuts down on using soap. We use their brand of dryer balls. Dreft for infants is our laundry soap. One needs to keep adjusting.
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1 ReactionWouldn’t a long Poise pad work as well?
Thank you for the info. I am going to try the Aquaphor 1%.
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1 ReactionProbably would work just fine but I like not dealing with pads.
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1 ReactionGotcha. I use the thin ones. 😀
I was told to use MonaLisa Touch Laser. I have done it for 3 years. It is extremely expensive and not cover by insurance. However when I did use steroids, I found using water (spray bottle or portable bidet) to keep urine off skin and using Aquaphor Advanced Therapy Healing Ointment, or aloe Vera & vitamin E help keep it away. But you must be diligent. One time it came back with a vengeance. Steroid injections did help along with mometasome steroid ointment. But when it became bad again, I tried the MonaLisa touch which works but you must do it yearly (maintenance). If i can’t afford it, I will have to back to using steroid ointment. I found after using clobetasol steroid ointment I had to use a less steroid ointment. The aquaphor also protects against urine.
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Helpful -
Hug
2 ReactionsI spent 15 months trying to get a diagnosis on what was wrong with me, started with pressure then lump that got worse as the day went on and became unbearable. Saw 11 doctors, tests: colonoscopy, 2 cat scans and 2 MRIs- all normal. Finally got into see a doctor that examined me lying down and standing up. She saw the prolapse and thought this would help me. I'm having my last Mona Lisa Touch next month, using creme daily. My procedure was $1000 per treatment - 3 needed - then one per year. Not covered by insurance. Pessary doesn't work for me so it's this or total hystorectomy. I'm better and hoping after the next treatment I'm even better. I do not want surgery at 78 if I can help it.
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1 ReactionCO2 laser therapy
How often do you have it done?
@quizski
@quizski who are you asking about the CO2 laser therapy?