Lichen sclerosis? Symptoms return when stop using clobaderm?

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I have been using clobaderm once aday everyday for about 2 months. The gyno said she thinks it's lichen sclerosus. I have the itching, the redness, and some "loss of architecture" (the gynocoligists words), cannot remember the parts of my vagina which have changed.

I had my biopsy on Tuesday... so I have stopped using the cream as I was told to until it heals.

As soon as I stop using the cream, I become insanely itchy, all my symptoms come back.

My clitorus is very itchy, and all the bits around it, the very inner creases. I also get these strange sharp pains down there. My anus also itches aswell.

I have also become constipated, I can go and pass stools, but it's abit of a struggle every time. The constipation was happening never I stopped the cream.

The other symptoms started about a day or 2 after my biopsy.

I understand with ls you are suppose to ween yourself off the steroid cream. So if I have been using it for awhile, and stopped now, why is it all back, it's like I've never been using it. I just cannot imagine me not having a break and only using it every so often.

The gynocoligist who did the biopsy, I haven't seen her before. She said it the areas in affected in and the redness is in the same places where ls is usually located, but I am young to get it, and I have no white patches.

I'm 31, and I'm diabetic, which I have been researching and I think that may have brought it on.

She also took the sample a lot lower than I thought. I looked in the mirror and the places that affect me are much higher, near the clitorus and she has taken it lower down not far from the enters fr to the vagina. I'm hoping it will still get the result I need to get this sorted. Don't fancy another biopsy.

Sorry for the long ramble lol 😞

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  • Posted

    To stop the insane itching, i use bicarbonate of soda ( baking soda). Diluted in water and sloshed on or have a bath with bicarb in.

    i seem to be having some success alternating with bicarb or  borax.   (There is a thread on here called an experiment with borax.) i have stopped itching as much and havent used the steroid ointment for a couple of weeks.

    you probably have bicarb in your cupboard,  if so, you could try it now....

    xx

    g

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    • Posted

      Thankyou nelsmydog and 6hanny.

      I put baking soda on my list and brought some this morning. I will give anything ago. Will try it in Afew days time. My biopsy is still fresh and was told not to use anything on it or even avoid a bath for a week. It's very tender at the moment aswell as it became infected which im now on antibiotics for. So as soon as its started healing I will try the baking soda.

      The gynocoligist did tell me to ween off the cream and start using it twice a week. I was just alittle confused because I was only off it for aday after my biopsy and the symptoms came back. But I will try incorporate other things like the soda to see if that helps.

      I'm ok with the diet 6hanny, I'm diabetic so I have to limit the sugar intake anyway. But I could try reducing gluten and caffeine.

      I will also do some reading aswell on the other forums like you suggested, get some helpful tips.

      Thanks guys 😊

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  • Posted

    Unfortunately LS will always be with you.  Perhaps your doctor didn't tell you.  However,  once you have it under control it will become better to live with.

    ?At first you will indeed have to continue with the use of clobetasol.  I hope the doctor told you to use thin layers.  Did he/she also mention to eventually go to a maintenance level - only twice a week? 

    ?At the same time I would recommend looking at a diet.  It is known that LS thrives with sugar intake for example.  Taking the extra sugar out of your diet will be helpful.  Also - how's your stress level?  Stress again aggrevates LS.  Some people have changed their diet as far as avoiding gluten, alcohol, caffeine and most dairy products and only small amounts of meat. 

    ?Furthermore - bathing in baking soda water or borax keeps LS down nicely as well.  Rinsing with baking soda or borax in a Perin bottle after each bathroom visit is also beneficial. 

    ?Do some reading on the various topics on this forum.  It takes a bit of time to get LS under control. After that one has to stick to a regular maintenance schedule. 

    ?Wishing you well.

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  • Posted

    Hi, normally you would stop using the clob every day when symptoms start to,get under control and it stops flaring up. It took me over 6 months until I started cutting down on the clob. I was diagnosed when I was 19 and I'm 21 now, I think it's becoming more common for younger people to get LS, but not a lot of doctors are very clued up on the disease. I don't have any white patches, just intense itching, sharp pains, aches and soreness. I used have really red areas but I seem to have got that under control and only occasionally have the itching and soreness now. I use coconut oil when not using clob, it helps with itching and calms things down. I sometimes use the bicarbonate soda spray after using the toilet, I need to start doing that more regularly. Hope this helps, the women on this site really helped me with methods to keep my symptoms under control

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    • Posted

      Hi jessicat thanks for replying

      Was you ok using it everyday for 6 months?

      Maybe it's different for people, I can't cut down yet as it came straight back when I did. It Might just take longer like yourself.

      So it does occur in younger women. I did find something online that suggested it did but not many, But it does occur.

      My symptoms are the same as yours. I have noticed the redness has eased down a lot, does not look as raw. It's very light now.

      I have bought the soda this morning so I'm going to give that ago. And I will also try the oil aswell.

      Thanks Jessicat

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    • Posted

      Hi

      Yeah i was ok using it for that long, but i only did as i had to travel to see my dermatologist so i couldn't get back and see him as frequently as i would have liked to. it might be trial and error with cutting it down, if you go to maybe 4 days a week and see how that goes and if symptoms come back keep on with every day.  I found that tight clothing like jeans and shorts aggrevated the LS and made it go very red, so i generally wear dresses and skirts alot now which has helped alot. 

      Hope it goes well, i think maintenance is the key to keeping the symptoms at bay

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    • Posted

      Hi jessicat

      I think it is trial and error. I will cut it down, I've started using the baking soda so fingers crossed.

      I also don't wear tight clothing while Im having symptoms. Before i had the biopsy and cut the cream down, I could wear jeans and tights. It's only now while it's back I can't. But once I've got it under control I hopefully will be able to.,

      I agree it will be down to mainting it.

      I will get use it in time and learn how to control it. Thankyou for the handy tips 😀

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  • Posted

    I'm Diabetic too. I have LS also. Something to do with our Immune system. I also had irritation around my rectum. I use a fragrance free or sensitive skin wipe after I use the bathroom. Helps alot. No longer have irritation around rectum area and                  the Clob keeps the other area flare free.

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    • Posted

      Hi deborah82032.

      I've read that online aswell about diabetes being linked to ls.

      I've got asthma aswell which effects the immune system.

      I bought some of them when I bought the baking soda. Fragrance free wipes! I read toilet paper has fragrances/perfumes etc that can irritate you down below if your sensitive. My rectum is irritated, it feels like cuts have appeared down there aswell. So I think those wipes will come in good use. I've also changed my washing powder. Thinking of any little thing that might help towards it

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