Sorry to hear you have been dealing with this for so many years. I’ve been lucky that the Clobetasol ointment usually keeps mine from getting too bad. I do have a lot of scar tissue though. Take Care. 🙂
Hi, im 33 and just got diagnosed with lichens sclerosis last year. I got inflamed and itchy so I went back on my steroid cream, after a week of not clearing up, I made appointment with my gyno. For some reason she has been off with my care, and I think she is young and spread too thin. She dismissed me, saying she wished she had a magic wand, but she doesnt. Hmm. Thats scary, i left confused. I started treating it with cream for yeast infection. It is helping but may need a pill. I tried to show her a place on my labia that had bled, and also dismissed this. Well the other night it broke open again and bled. It is red and irritated. My doctor has thrown me for a loup with her behavior and im in a pickle of going back or finding someone else. Im too tired for any drama. Im just not sure how serious this is. I will watch it. Im just very mad at the situation, as I am trying to focus on other health issues. Dont know if anyone can relate. Im just so stressed about everything and i want to hibernate in my bed and take a long break.
@januaryjane- Good morning and welcome to Mayo Connect. I am a Mentor for Connect, usually in the lung cancer and wellness group, stop smoking and join in with recipes and general gabbing. I'm 72 years old and have had my share of yeast infections. Now I get them occasionally. The only time that I experience any pain is if my urine is too strong from lack of enough water and if I am dry. So I put on Aquaphor. It's a ramped up Vaseline with mineral oil, lanolin, glycerin, etc. that coats the skin. This might help.
I'm horrified that your gynecologist reacted the way she did. I hope that you reported her. I suggest that you seek another one and get a thorough work-up by a gyn who is familiar with symptoms of lichens sclerosis, or will work with you and learn more about this disease. Can you get a recommendation from anyone in your area, or from forums?
I am posting ONLY to give hope to others their lichen schlerosis will go away like mine did ! From April 2018 to July 2018 I was diagnosed with it and treated by my female gynecologist who prescribed a dab of Clobetasol daily ! It was only on one side and high up on the outer lips BUT it nearly drove me crazy ! At age 77 then it was just AWFUL ! Unfortunately I can not recall what if anything significant that I did or changed that might have contributed to it going away ! But all of a sudden it was gone ! And remains to to this day, knock on wood. Occasionally I will feel a tiny little itchy/scratchy feeling like it might be coming back. But I always reach for a dab of Clobetasol which seems to take care of it ! For whatever it's worth, including zero, I am totally celibate . The only thing I can think of that I changed was not sitting in my plastic sitz bath with warm water for relief. I stopped using it wondering if there were some sort of germs on the plastic bowl, itself. I am not suggesting that contributed to it going away. Who knows !! However I can't help but wonder if, except for the Clobetasol, keeping the area more dry rather than more moist was a key to it going away ! ANYWAY, I know all this sounds crazy and I agree ! Nevertheless, here's hope yours also will go away SOOON ---and fingers crossed mine will not return ! !
@misssassy- Welcome back to Connect. What a wonderful outcome for you, and a relief. Thank you for sharing your story and suggestions. You might have something there with keeping the area dry and not sitting in a plastic tub that really can't be cleaned that well. Who recommended a sitz bath for you too use?
No one suggested I use the sitz bath. I had one on hand that relieved a long ago hemorrhoid problem . The warm water DID provide some comfort , as hoped for, though it certainly was temporary !
I am posting ONLY to give hope to others their lichen schlerosis will go away like mine did ! From April 2018 to July 2018 I was diagnosed with it and treated by my female gynecologist who prescribed a dab of Clobetasol daily ! It was only on one side and high up on the outer lips BUT it nearly drove me crazy ! At age 77 then it was just AWFUL ! Unfortunately I can not recall what if anything significant that I did or changed that might have contributed to it going away ! But all of a sudden it was gone ! And remains to to this day, knock on wood. Occasionally I will feel a tiny little itchy/scratchy feeling like it might be coming back. But I always reach for a dab of Clobetasol which seems to take care of it ! For whatever it's worth, including zero, I am totally celibate . The only thing I can think of that I changed was not sitting in my plastic sitz bath with warm water for relief. I stopped using it wondering if there were some sort of germs on the plastic bowl, itself. I am not suggesting that contributed to it going away. Who knows !! However I can't help but wonder if, except for the Clobetasol, keeping the area more dry rather than more moist was a key to it going away ! ANYWAY, I know all this sounds crazy and I agree ! Nevertheless, here's hope yours also will go away SOOON ---and fingers crossed mine will not return ! !
Actually no one advised the sitz bath. I happened to have one of the plastic tubs on hand from a long ago hemorrhoid problem and thought the warm water would be soothing. Which it was ! But like previously mentioned I stopped using it, fearful it might be a germ carrier of some sort ! I'll never know if that had anything to do with my (hopeful ) recovery ! But it's my story! So far, so good still to this day ! And I wish everyone reading this would have the same sort of luck ! Best wishes !
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.
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.
@honolulukk I see a gynecologist who sees many patients with lichen sclerosis. I was prescribed clobetasol. There has been improvement. It cannot be left untreated. I had also seen a dermatologist who also deals with women who have l.s. Same advice.
@honolulukk I see a gynecologist who sees many patients with lichen sclerosis. I was prescribed clobetasol. There has been improvement. It cannot be left untreated. I had also seen a dermatologist who also deals with women who have l.s. Same advice.
@honolulukk I sometimes get irritation also but persist in using it. The gynecologist said can be applied as little as 2 times a week, although I do now use it more often than that. You will find that if you leave this condition untreated, it will get worse.
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Sorry to hear you have been dealing with this for so many years. I’ve been lucky that the Clobetasol ointment usually keeps mine from getting too bad. I do have a lot of scar tissue though. Take Care. 🙂
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1 Reaction@januaryjane- Good morning and welcome to Mayo Connect. I am a Mentor for Connect, usually in the lung cancer and wellness group, stop smoking and join in with recipes and general gabbing. I'm 72 years old and have had my share of yeast infections. Now I get them occasionally. The only time that I experience any pain is if my urine is too strong from lack of enough water and if I am dry. So I put on Aquaphor. It's a ramped up Vaseline with mineral oil, lanolin, glycerin, etc. that coats the skin. This might help.
I'm horrified that your gynecologist reacted the way she did. I hope that you reported her. I suggest that you seek another one and get a thorough work-up by a gyn who is familiar with symptoms of lichens sclerosis, or will work with you and learn more about this disease. Can you get a recommendation from anyone in your area, or from forums?
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Helpful -
Hug
2 ReactionsI am posting ONLY to give hope to others their lichen schlerosis will go away like mine did ! From April 2018 to July 2018 I was diagnosed with it and treated by my female gynecologist who prescribed a dab of Clobetasol daily ! It was only on one side and high up on the outer lips BUT it nearly drove me crazy ! At age 77 then it was just AWFUL ! Unfortunately I can not recall what if anything significant that I did or changed that might have contributed to it going away ! But all of a sudden it was gone ! And remains to to this day, knock on wood. Occasionally I will feel a tiny little itchy/scratchy feeling like it might be coming back. But I always reach for a dab of Clobetasol which seems to take care of it ! For whatever it's worth, including zero, I am totally celibate . The only thing I can think of that I changed was not sitting in my plastic sitz bath with warm water for relief. I stopped using it wondering if there were some sort of germs on the plastic bowl, itself. I am not suggesting that contributed to it going away. Who knows !! However I can't help but wonder if, except for the Clobetasol, keeping the area more dry rather than more moist was a key to it going away ! ANYWAY, I know all this sounds crazy and I agree ! Nevertheless, here's hope yours also will go away SOOON ---and fingers crossed mine will not return ! !
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5 Reactions@misssassy- Welcome back to Connect. What a wonderful outcome for you, and a relief. Thank you for sharing your story and suggestions. You might have something there with keeping the area dry and not sitting in a plastic tub that really can't be cleaned that well. Who recommended a sitz bath for you too use?
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Hug
2 ReactionsNo one suggested I use the sitz bath. I had one on hand that relieved a long ago hemorrhoid problem . The warm water DID provide some comfort , as hoped for, though it certainly was temporary !
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Helpful -
Hug
1 ReactionActually no one advised the sitz bath. I happened to have one of the plastic tubs on hand from a long ago hemorrhoid problem and thought the warm water would be soothing. Which it was ! But like previously mentioned I stopped using it, fearful it might be a germ carrier of some sort ! I'll never know if that had anything to do with my (hopeful ) recovery ! But it's my story! So far, so good still to this day ! And I wish everyone reading this would have the same sort of luck ! Best wishes !
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Helpful -
Hug
1 ReactionHow 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.
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Helpful -
Hug
2 Reactions@honolulukk I see a gynecologist who sees many patients with lichen sclerosis. I was prescribed clobetasol. There has been improvement. It cannot be left untreated. I had also seen a dermatologist who also deals with women who have l.s. Same advice.
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2 Reactions@honolulukk I sometimes get irritation also but persist in using it. The gynecologist said can be applied as little as 2 times a week, although I do now use it more often than that. You will find that if you leave this condition untreated, it will get worse.
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1 ReactionAfter showers or when I am dry, I smooth on some Baby Aquaphor. Find it in the baby isle. It helps prevent chaffing. Good for your lips too
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