Lichen sclerosus anyone?

Posted by ret18 @ret18, Jan 31, 2018

Anything out there that works other than steriods

Liked by kellyj2b

@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

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@suzeebee, I did find the following information that may provide an answer for your question.

What Are the Long-Term Effects of Clobetasol Propionate?
http://skin.emedtv.com/clobetasol-propionate/clobetasol-propionate-side-effects-p3.html

John

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Hi John,
Thanks for this information. It will be very helpful to me.

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@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

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Thanks for the reply & info. Clobetasol is all I've ever used and it does work for me but I began thinking it may not be safe over many years. I had such a large amount of ointment prescribed, I've not gone back to the gynecologist. Seems to me many on this site have many more problems controlling this condition than I do, although I know it will not go away on it's own, so must continue to treat it.

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Loose clothing, daily showers, coconut oil, and steroid cream all help so much that most of the time you don't really know that you have this disease. Thanks for all the input on this. If anyone has more info that would help someone please post.

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Suggestions for relief ???

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Hi @misssassy,

You may notice that I moved your message and combined it with this existing discussion on Lichen sclerosis. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed this condition and who may be able to provide more information.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm also tagging @kitten92 @mzleah @danybegood1 @tropicallady1276 @momij @ret18 @katzee with the hope that they will return and share their insights. @misssassy, when were you diagnosed with lichen sclerosis? Are you taking any medications for the itching?

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Wondering if anyone has experienced less symptoms with the itching and need for steroids while taking pain medicine. I recently have been diagnosed with diverticulitis and also passed out and broke my collar bone. During this I was taking morphine and hydrocodone while in the hospital. Released with hydrocodone and tramadol 2 months ago. Only using tramadol at this time. It seemed the lichen sclerosis subsided when on the more powerful pain relievers. Not a case for taking these but interesting all the same. I plan to visit Mayo in December for my 5 year knee replacement checkup and am thinking of making a appt for lichen sclerosis as well.

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Following is what I posted March of last year– I hope thIs helps. I forgot to put in my original post that I also used a compound RX which contained hyloronic acid (not sure of spelling). I am happy that this condition is now under control.

Lichen Sclerosus is now under control after years of doctoring but finally finding Dr. Nyirjesy from Drexel University College of Medicine in Philadelphia, PA who I’ve been with about four years.

My symptoms were extreme itching and burning constantly everyday. I would come home from work and get in a hot bath hoping it would take away the burning and itching. These symptoms were very bad. I went to many doctors over the years and took many medications– to no avail. Nothing seemed to work.

I am now using Betamethasone (gel to apply externally), Vagifem (insert vaginally)– both twice a week. Amitriptyline (10mg daily) which is for depression but it was learned that it helps with Lichen Sclerosus but now I will be weaned off of it since my symptoms are under control.

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@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

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Sue G
I have been using Clobetadol ointment for about 10 yrs. I get lesions, itching, and burning. I use the Clobetasol twice a week. If I have a bad flare, I use it every day for three or four days.
Tammy 🙂

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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

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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Hello, @januaryjane – welcome to Mayo Clinic Connect. I'm sorry your care for this condition thus far has left you feeling confused and stressed. I moved your discussion and combined it with @ret18's discussion similarly titled, "Lichen sclerosis anyone." I did this so you could meet @ret18 @suzeebee227 @misssassy @tropicallady1276 @tamarrillo2 and other members who have discussed lichen sclerosis. Hoping they will have some input for you on the seriousness of the situation from their own experiences and can help you get some answers.

How long have you used the cream the doctor prescribed? Do you have a primary care provider you could also check with on your situation?

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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 I know nothing about this condition, but if my doctor seemed that disinterested, I would definitely find a new doctor.
JK

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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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Hi! I have had Lichen Sclerosis for 15 years or more. My first suggestion is that you find a new doctor. There are prescription medications for the condition and there’s no excuse for your doctor blowing you off like that. I use Clobetasol Propoipinate two – three times a week and it has helped greatly. I used to have areas break open and bleed like you mentioned. Since being on the Clobetasol, I don’t have that happen anymore. With the right treatment it gets better so hang in there. Take Care. 😀

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@tamarrillo2

Hi! I have had Lichen Sclerosis for 15 years or more. My first suggestion is that you find a new doctor. There are prescription medications for the condition and there’s no excuse for your doctor blowing you off like that. I use Clobetasol Propoipinate two – three times a week and it has helped greatly. I used to have areas break open and bleed like you mentioned. Since being on the Clobetasol, I don’t have that happen anymore. With the right treatment it gets better so hang in there. Take Care. 😀

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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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@lisalucier

Hello, @januaryjane – welcome to Mayo Clinic Connect. I'm sorry your care for this condition thus far has left you feeling confused and stressed. I moved your discussion and combined it with @ret18's discussion similarly titled, "Lichen sclerosis anyone." I did this so you could meet @ret18 @suzeebee227 @misssassy @tropicallady1276 @tamarrillo2 and other members who have discussed lichen sclerosis. Hoping they will have some input for you on the seriousness of the situation from their own experiences and can help you get some answers.

How long have you used the cream the doctor prescribed? Do you have a primary care provider you could also check with on your situation?

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Hi, ive been on the cream on and off maybe a year, give or take. I live where there are not many choices in drs. I dunno, i will have to call her again, but be more direct. Looking for a gp, as mine has retired. They are hard to find too, good ones.

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