Lichen sclerosus anyone?

Posted by ret18 @ret18, Jan 31, 2018

Anything out there that works other than steriods

Liked by kellyj2b

Thanks for all the good information. I’ve been on Betamethasone. I’ve found doctors would rather not deal with it…they want to be in and out to move onto the next patient. Still looking for a doctor.

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@januaryjane

Yes, ive been on this cream on and off, but since it is a very strong steroid my dr suggested to quit using it. She made 2 suggestions about either using a topical estrogen cream or changing my birth control. I apply baby aquaphor when i seem too dry and be very careful. I think i have another yeast infection, which seems impossible, i dont take baths or been in any type of body of water, etc etc. I know things are connected, i just need to get ahold of someone really knowledgeable, and cares. Unfortunately i have to travel hours to see any sort of specialist. I just want to figure this out

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Hi! The Clobetasol propoipinate is the only thing that has worked well for me. I was miserable before my Primary doctor prescribed it. You do have to be careful to not use more than couple times per week so it doesn’t thin the tissues. I My Gynecologist was prescribing me flucinonide but that just didn’t work well enough.

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@tamarrillo2

Hi! The Clobetasol propoipinate is the only thing that has worked well for me. I was miserable before my Primary doctor prescribed it. You do have to be careful to not use more than couple times per week so it doesn’t thin the tissues. I My Gynecologist was prescribing me flucinonide but that just didn’t work well enough.

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I was diagnosed with Lichen sclerosis over 30 years ago. Hard to know what to do with me since all the steroid ointments cause more irritation than the l.s. Needless to say, the condition has worsened over the years. Have gone back to sporadically using the clobetasol. Have been seen by dermatologists and gynecologist whose area is vulvar skin conditions. I also keep forgetting to apply moisturizing oils like coconut oil or olive oil. (I find unsalted butter feels great and the gynecologist had no problem with that). She did reccomend keeping the area from being dry.So far nothing bad has developed (cancer of the vulva). Have tried other steroids and that other ointment (tachcrolimus): even worse reaction. It's a challenging situation!

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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. 🙂

Liked by sue225

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@januaryjane

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.

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@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?

Liked by lioness, sue225

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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 ! !

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@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?

Liked by lioness, jolenemo

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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 !

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@misssassy

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 ! !

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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 !

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