Lichen Sclerosus- How Often Should I use Clobatesol?

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Hello! 

I am 27 years old and I had been diagnosed with LS two years ago. I was given the clob ointment BUT I only use this when I am having a flare up. Is this the correct method or is it different for everyone. I feel as though my labia atrophy is getting worse and my clitoris is completed covered. I feel like the damage has been done and sometimes feel lost and confused as to what I should do next. 

Thanks for everyone's help! 

-Nicole

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19 Replies

  • Posted

    Hi Nicole,

    are you seeing a vulvar specialist or gyn? The first gyn I went to told me to only use clob when I had a flare up but after research I started going to a vulvar specialist. After using the clob twice a day for two weeks (to get the LS under control) she had me go to twice a week and I did that for 9 months and have been on once weekly for the last two years and will probably be on that for rest of my life. Not a lot of docs are knowledgeable about LS so it is important to find one who is, I would suggest a second opion with a vulvar specialist or vulvar dermatologist. Good luck.

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  • Posted

    Hi there, the problem is that you will get conflicting advice from everyone, doctors included.  

    For someone with a severe flare up, (with white plaques of skin) my view is that the first priority is to get the LS under control and so I think that they would want to be using Clob  twice a day for a couple of weeks, reducing to once a day, then every other day until everything looks ok, and then perhaps once a week for a while.  After that I personally, don't believe in using the Clob unless you have a flare up, that's just my opinion.

    For your current problems, you could try putting Clob twice a day on your clitoris for a week or so and see if that works.  Also, do a search and look at the thread regarding Borax, many women swear by that, that might also help.

    You really need to be seeing someone at a Vulvar clinic, especially as you are so young as doctors are sometimes as ignorant as we are when we are first diagnosed.

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  • Posted

    You should have been told to initially use every day for a month, then energy other day for a month, (some are told for 2 weeks) and thereafter if the skin is clear of white plaques twice a week as maintenance. the condition is always present and needs to be kept at bay I'd you see what I mean. Also you MUST rub in the steroid for at least 90 seconds so that it goes into the deep tissue where the inflammation is. are you using a moisturiser/ barrier ointment every day ? I use HYDROMOL and I spray with water to which a couple of pinches of bicarbonate of soda had been added after I use the loo. How this helps.

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  • Posted

    Perhaps you should also look into using baking soda or borax baths and rinses.  Plus use of coconut oil.  And check your diet.  Sugar is for many a sure trigger.  I avoid all added sugar (not natural sugar)  and eat gluten free, for example.  Made a big difference in my life.  And I do regular dilation.  All this 'damage' can be reversed, is my experience.  Though had to live a disciplined life and be diligent with the baths and rinses. 

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    • Posted

      Dilation is stretching the vagina.  Can be done with the help of a dilator, which comes in various sizes. 
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    • Posted

      They are plastic or silicone plugs that you insert into your vagina. Some come in 8 sizes from really tiny to large. You go from one size to the next larger very slowly. I'm using them

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  • Posted

    Hi, When I was diagnosed (recently), my GP suggested that I work through the twice a day, once a day down to twice a week for maintenance, and to carry on with that unless my Gynae  recommended anything different.  I have done quite a bit of research (medical papers, not strange internet web-sites!) which have all recommend carrying on with a small amount of maintenance steroid cream.  Did your GP or Gynae give any indication as to how you should continue after the initial treatment?  Suggest you get an appointment to see your Gynae for a review.  The research also suggests that everyone with LS should be reviewed annually.

    Best wishes.

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    • Posted

      After all is calm and well, I use the clob sporadically.  My gyn says to keep doing what I'm doing and I see him every six months. When I use clob I use the smallest possible amount.  Just when you can feel that it wants to act up in a certain area I use the smallest amount to calm things down again.  This far I'm good.  Together with baking soda or borax baths and rinses.  I also do dilation twice a week.  Plus I keep a strict diet = no added sugar, no gluten, no alcohol, no caffeine and limited dairy.  Eating healthy and using fresh produce to prepare my meals.   

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  • Posted

    I use Clobetasol twice a week. My Dr. called it a LS Maintenance Plan
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    • Posted

      I was tapered ever so slowly and have been on clobetasol 1x week (which my specialist also called maintenance plan) for about a year and a half. So far so good. This is working so far for me, but everyone is different and should follow their docs plan if it is working for them.
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  • Posted

    I know how you feel. My inner lips and clitoris shrunk so quickly, it’s scary. When I was first diagnosed my vulvar specialist said I needed to hit it and hit it hard. Clobetasol twice a day for a month, then daily for a month and then every second day for a month until I was down to once or twice a week and I had no symptoms. Where my LS was initially is now inactive, the clob has worked really well. However I’ve had new areas flare up in the last week so I’m back to using it twice a day in these new areas. She says I’ll need to use the clob for the rest of my life to suppress the LS even if it’s just once a week. She’s the expert so I’m following her advice and I’m so glad I have or my vulva would have disappeared completely otherwise!
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    • Posted

      Hi Isabelle, I have a question for you if you don't mind.  Once you started to use the Clob it stopped the shrinkage.  But,  am I correct in thinking that the shrinkage did not go back to exactly how things were before? but it just didn't get any worse..is that correct?

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    • Posted

      Yes exactly. It stopped it from shrinking any more but it hasn’t gone back to what it was. To be honest I don’t really mind, I think I was lucky I got ontop of it so quickly and I’m just glad I don’t have to deal with the burning and itching anymore.
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    • Posted

      Thanks Isabelle.  I have had a lot of shrinkage too.  T here is not much you can do about it really.  The main thing as you say is to be thankful that you don't have the burning or the dreaded itch.

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    • Posted

      Have you asked your Dr. about maybe using Estrace vaginal cream? If you are menopausal or after ? It's sure helped me!

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