Has anyone had no relief from using Clobedasol?

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I'm not new to this forum but have yet another question or two.

Has anyone found that using the Clobedasol (which my old gyno said is the best ) doesn't seem to be working?

Also if it's possible to have the lichen a bit vaginally internal in addition to the outside. I've been having soreness and much discomfort just inside also. My gp did a swab but no infection was present and he said you cant have it on the inside anyway. so now I'm very worried until my new gyno referral because there was no infection to account for the soreness inside.

My gp couldn't do a pap smear because the speculum was too big and he said it would hurt a great deal.

Thanks,

Carol

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  • Posted

    I had discomfort just inside also. I had been seeing a male gyno and he told me it was herpes! My response was, you're fired. He obviously had no clue. I did a lot of research on the internet to figure out what was wrong. When I found LS, I printed out the information, made an appointment with a FEMALE gyno, and went armed for battle. What I found was a sympathetic ear, someone who understood my discomfort and frustration. She listened, looked at my research and said, well..the only way to find out for sure is to do a biopsy. It was painful, but it proved I was right! Until recently, there was only the clobetasol. I found it helped a little with my tears. But if I used it too much, the skin became more fragile. A friend who was using it told me her doctor felt it was too strong, and you should never use it?? (Probably a male!) Recently they have approved the Mona Lisa Touch here in the U.S. It is a laser treatment. My doctor treated me exterior and interior. My atrophy was not real advanced but my tissue was quite fragile. I had 3 treatments 6 wks apart. The last one was the most painful. I am now three weeks post treatment and I am very happy with the results. The itching is gone, the tissue is plump and pink. I still have a little dicomfort after intimacy, but it readily repairs and is gone within a day or so. In my experience, it pays to get a second opinion. Don't discount the benefits of a female gyno. And I would highly recommend Mona Lisa Touch.

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    • Posted

      Thanks Tabby,

      I guess in a way the referral to this new gyno will be a second opinion (from a gyno) but moreless only by a fluke. My first gyno moved his practise to a new city so my gp has given me a new referral. I'm really not sure if it's a male or female but I'm hoping it's female.

      I had a biopsy performed when the LS first appeared and hence the diagnosis of LS. That was over 2 years ago and I was prescribed the Clob. It helped quite a bit but now with this 2 year later flare up it is doing nothing. And I'm feeling it on the inside this time which you say you've experienced also. I will bring up the Mona Lisa

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    • Posted

      hi Kubie,

      ya they have the Mona Lisa Touch in the U.S. i think that's where Tabby is too.

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  • Posted

    It works for awhile..but it's a steroid..which means you can only use it for a couple of months before it stops working..it doesn't necessarity help with the itch either.

    Once I started using Protopic..it changes the skin and is not a steroid. You still might have flare ups..but it has diminished overall itching...most of the time.and the labia looks fuller and softer..no more lichen look to it.

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    • Posted

      Hi

      Thanks so much for the response.

      I'm having soreness rather than any itch with this flareup . I wasn't even sure that was normal but some have stated they have experienced no itch .

      Yes it's a steroid so I figured that may be why it's pretty useless at this point.

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  • Posted

    It works well for me. I use it three times a week. That's all I use. If I begin to notice a small itch, I immediately use it and it works.

     

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  • Posted

    Hi Carol,

    ​Its going on 20 years fighting LS for me.  Yes, in the past I have had rawness in the vagina.  I us a combination of many things.  I use Yin Care diluted and wash out the vagina with a reusable douche. when this happens.  It contains dozens of herbs that help cool the heat and sooth the tissues.  It got pricrey over th years but it lasts a very long time.  I also usea mix of lavender, calendula, helichrysum ​and tiny amount of peppermint essential oils in a carrier of jojoba oil for in between my daily application of the clob.  Lastly, I use bioidentiacal estradiol and progesterone but stop the progesterone when I have my menses.  The clob usually does th trick but sometimes when a flare is really bad you may need more help.  Look at diet as well. When I eat chocolate or a lot of starch the heat starts to build in the vaginal area so I try and stay away from them.  Hope this helps

    Dianne

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    • Posted

      Hi Dianne

      Thanks very much for the suggestions.

      Funny you mentioned chocolate because I devoured lol a huge hunk of chocolate today and now the flare up is worse than ever. I never knew that diet could affect LS.

      I wondered if the vaginal discomfort you had due to rawness caused any kind of mild pain as well as soreness? At times I will experience a mild type shooting pain .

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    • Posted

      Best thing to do is eliminate. Shellfish, wheat, dairy and for some night shade veggies and sugar,  Then after a few weeks see how you feel.  Journal your moods, cravins, any inflammation, breakouts, burning, bloating and so on.  .  Add 1 category (1 thing)  back in at a time and wait an entire week.  Sometimes it can take that long and if you do not joural you may miss the link.  I wish I knew then what I knew today.  My father had an immune disorder and I could have helped him so much had I known then he was eating all the wrong things
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    • Posted

      OK Dianne and thanks again. I am going to give the journal etc. a try. At this point I will try anything and everything.

      Do you think I should also use a moisturizer like Replens? I recall my first gyno giving me a packet of the inserts a few years back.

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    • Posted

      Thanks again Dianne. Will give the journal etc a try.

      Also do you think using a moisturizer will help? 2 years ago my gyno gave me a pack of inserts called Replenish.

      So true about wishing we had known then what we know now.

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    • Posted

      Definitely especially since as we age our estrogen diminishes some of us have less lubrication/secretions in the vagina  That is the reason I use the estradiol oil and also the jojoba oil when needed. 
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    • Posted

      Hi Dianne,

      Can you please share with me your current condition ?

      Are your LS in remission at the moment ? and for how long since ?

      Do you still use Clob as a maintennace use ? If so, how frequent do you use it ?

      Did the Clob help you to reduce/clear the white patches ?

      Thank you so much, my wife just being diagnosed with LS last week. We are very sad.

      Thank you,

      Phong

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