May be LS? How much Clobederm is just enough?

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Hi, I'm 70 and I've had itching and discomfort for at least two years.  About a year ago I saw a locum GP who examined me, said I was very dry and prescribed Sylk moisturiser. This did nothing really and things gradually got worse.  I've been putting it all down to vaginal atrophy.  I saw a nurse practitioner two weeks ago who was very concerned about the level of inflammation in the vulva and labia area.  She prescribed Betnovate, which I've been using for two weeks twice a day.  

I saw my GP this morning and, although things have improved generally, I still have two areas of dark red inflammation.  So, I've now been prescribed Clobederm, twice a day, and will see my GP again in a month.  He  mentioned LS, so I know that's what he's thinking, although there are no white patches.  He also said, if it didn't clear up in the month he would take a sample to test for LS.

So, two questions really.  Firstly, does the above sound like LS to you?

Secondly, I've been told to apply the Clobederm 'sparingly', the same as I did the Betnovate, but I wondered if anyone could give me a more accurate idea about how much to use.  The leaflet in the box gives finger-tip measurements, but, of course, the genital area isn't mentioned!  I've been putting a very tiny blob of the Betnovate on the end of my finger and just spreading it about.  Is this OK?

 

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14 Replies

  • Posted

    Hi Cheetah I'm a couple p years older than you and had LS for 6 months,similar to you,I've been given HRT to use twice week with an applicator for dryness.I was worried about using steriods

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  • Posted

    I have LS. I use Clob 3 times weekly at bedtime. If using the cream, you have to gently rub it in for 90 seconds so it can penetrate the inner layers of the skin. If using the ointment, just use a small amount and gently apply it to the area. You don't have to rub it in. You have to be faithful. I also use Estrace 2-3 times a week at bedtime. I also use wipes to cleanse myself after urinating or having a bowel movement. This helps to keep the areas clean. Before I started using the wipes, I always felt galted or irritated in the rectum area. Now I don't get that since using the wipes.  LS is fairly new and alot of Dr's don't know how to treat it. It is not curable, just treatable. I have been reading on this post about a Mona Lisa Treatment. Some people with LS are trying it. Not sure how effective it is. My Gyn says that LS is caused by something with your immune system. Problems with your immune system causes alot of diseases.

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    • Posted

      I use a generic brand of wipes...however I select ones for sensitive skin or frangrance free.
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  • Posted

    Thin layers of the clobe is best. 

    ​Have you looked further on this site and noticed that diet - avoiding sugar for instance - helps as well.  Also look at the use of baking soda and borax.  It has helped many of us.

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  • Posted

    Thank you all for your replies.  I must admit to being a little wary myself when I was prescribed Betnovate, Gillian13139, but decided to go with it and it has certainly made a difference in only two weeks.  I asked my GP today about using HRT cream in the future to prevent dryness, but he wants to get this sorted first.

    Deborah82032, you mentioned wipes.  May I ask what wipes you use?  I regularly use Andrex Moist Toilet Tissue, but wonder whether these are making things worse.  Are some other wipes better?  I've been looking for non-perfumed ones.

    I'm making sure that I use thin layers of the Clobederm, Hanny32508.  Thank you for reminding me about cutting down on the sugar.  I will have a look at the use of baking soda and borax.

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    • Posted

      Rather than wipes try spraying with water with a little bicarb

      dissolved in it then pat dry with tissue. I then use a little

      coconut oil but only about4 times throughout the day this

      soothes and helps with fusion.

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  • Posted

    Hi, I use about quarter of an inch, it is plenty to spread over the

    whole area. I am only using it a couple of times a week now after a couple of years Good luck and persevere.

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    • Posted

      Thanks Ann67814.  I love the idea of the spray bottle with the bicarb.  Can you give me a rough idea how much bicarb I would put into a bottle with 100ml water?  And do you buy any particular coconut oil?  How would that work with using the steroid cream at the same time?  Sorry, so many questions, but I'm sure you understand!

      I'll be going shopping tomorrow!

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    • Posted

      Sorry that my last message disappeared before I had finished

      typing! I would start with less than half a teaspoon and make

      sure that it has dissolved before adding any more. Just the cool water feels good .I too am in my 70's I have been diagnosed for a couple of years, I bought pure coconut oil in a health food

      Shop. It is a great big jar but it goes a long way. I have only been doing the spraying and using the oil for a few weeks, but the level of fusion has been quite an issue forme and I can already see improvement. But continue with the steroids until told to reduce.

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  • Posted

    I get very red, almost purple areas too. I use a pea sized amount of clobetasol but mix it with some jojoba to give it a loose more spreadable consistency. I would try think you could use another carrier oil like coconut as well. Just works better for me than applying the med directly.
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  • Posted

    As another person mentioned, how much you need to rub it in depends on whether you have the clobetasol cream or ointment (I very much prefer the ointment), but a pea-sized amount spread thinly across the area is enough.  Coconut oil doesn't offer much relief for me personally, but emu oil has made all the difference in the world.  It's an extremely effective soothing and moisturizing agent.  I highly recommend giving it a try--along with the clobetasol ointment it is the only thing that helps to keep my LS symptoms at bay.  I buy one on Amazon from Dr. Adorable (ridiculous name, yes, but excellent product).  Warm baking soda baths help too, and I have one every night that I use clobetasol (3 times/week) just before I apply it.  The warm water softens the skin and helps it to really absorb the ointment or cream.  I actually apply emu oil as soon as I step out of the shower in the morning, before I've dried off, and it absorbs very effectively that way.  I've been living with LS for at least 20 years, diagnosed for the last 10, and this routine is what has made the most difference for me and completely restored my skin structure and elasticity.  At my last gyno appointment, the doctor said there were no longer any visible sign of LS.

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