LS and time of the month

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I'm 32 years old and was diagnosed with LS 6 months ago by biopsy. I had the horrible itch for 3 years or more. My gyno kept treating me for bacterial/yeast until I finally had a dark lesion or bump come up that did go away. I have the white patches and some areas are disfigured to my looks of it. I'm using Clob and sometimes it helps, but I still have flare ups especially during my time of the month. The itch is 10 times worse then and mostly at night. Any suggestions? Also, I'm due for my 2nd biopsy where the Dr said they may remove the worst patch. I'm not sure I will do that though because she said it will come back. What's the point?

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  • Posted

    I'd be afraid that having a patch removed would cause it to disfigure my body even more! I too, have read that it usually comes back. I have LS patches all the way up to my shoulders- front and  back. I had a HUGE patch in between my breasts. Years ago it was highly noticable but over time (15plus years) it  has become almost unnoticeable.  Right now I'm not having a flare but I really can feel your frustration with the HORRIBLE unrelenting itching!
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    • Posted

      Did you have it on your genitals first? I currently dont have it anywhere but there. I feel for you especially if itches all over. The place my Dr was thinking about removing is near the anus. It's the worse place I have and the worst itching especially during my period. Maybe because of the moisture I don't know, but yeah I see no point in removing it. Thanks for responding. It's nice to talk to others with similar conditions.
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    • Posted

      i hope you dontmind me joining thediscussion kischelle,so sorry you are also sufering from this horrible condition, but i was interested to see your post Mary as i also have patchs on other parts of my body shoulders,stomach tops of my legs at the front and most of my breasts are now covered, it all started with a small white patch under my left breast which is when they found that i had LS, i have soreness and splitting down below but not as  bad as so many on this site,i just wondered if you found anything that helped the patches on the other parts of your body as i find them very distressing and uncomfertable.
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    • Posted

      Over the years many of the patches have faded. I still do have some huge patches though. When the patches really start to itch as they do periodically, I put a little bit of Desitin on them. Nothing but time has helped their appearance though. If you find something that helps you, let me know!
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  • Posted

    Hi Kischelle,

    You sound like you're much in the same boat I was a few years ago.  I've posted on this site in the past and while some people on this forum will disagree with me, my recommendation to you will still be to ask your doctor to have you try the prescription medication Protopic, which has (thankfully) now been released here in the US in its generic form, Tacrolimus topical.  I would highly, highly recommend it - Clobetasol didn't do squat for me; Protopic/Tacrolimus has saved my life.  I'm now symptom-free.  People can wax philosophical all they want about the benefits of Clobetasol, but in my mind it's an "old school" treatment that doesn't really work.  Tacroliumus is an immunosuppresant.  I've never experienced any side effects with it, though apparently some others have...  it's definitely worth trying at least.  If your OB/GYN doesn't know what it is, then he/she shouldn't be treating your Lichen Sclerosus.  If you get nowhere with your OB/GYN, go see a dermatologist instead.

    Good luck,

    Denise

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    • Posted

      Wow, symptom free....sounds good to me. I will definitely mention that to my OB. The clobetasol helps for a little while, but I can't go long without using it. I may look into the dermatologist too. I split very easy also so intercourse is possible but with caution. Thank you for the reply.
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    • Posted

      Hi Kischelle,

      You're welcome; I hope it works for you.  Just to clarify - when I say I'm "symptom free" - I'm saying that I have to use the Tacrolimus on a nightly basis in order to stay that way.  As soon as I slack off, it comes back.

      As for Clobetasol, the problem with it is of course that it thins your skin with frequent use - so using it daily is a bad idea.  But if you have a bad case of LS you have no choice, unless you find a replacement medication such as the Tacrolimus, which has no side effect of thinning the skin.

      Also FYI when you start using the Tacrolimus, it will burn a bit for the first few minutes after applying, however this is temporary until the skin starts responding to it.

      Best of luck to you - 

      Denise

       

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    • Posted

      Does the tacrolimus help with bruising after gentle sex. I can't seem to get anything thing to help tried the usual stuff but still have blood to the surface bruising. I'm talking about just normal lovemaking. It seems ok while it's happening it's after I'm relatively symptom free at the moment so it's annoying 
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  • Posted

    Hi Kischelle,

    I too am as they call 'symptom free'.  At first I had to use Globetasol regularly, then twice a week.  Fusing kept growing, but the itch went away.  Then a flare up so bad that all but a pin hole for urinating was left.  I looked more or less as someone said like a barby doll.  After a procedure done by a gyno called dilating (NOT surgery and cutting!) I regained the ability to urinate again and much more. By accident I discovered that regular baking soda baths and baking soda rinses with a spray bottle (the kind women get to use after delivering a baby) after every bathroom visit, then covering with coconut oil made that fusing somehow melted.  This in combination with an alkaline diet (no gluten, no dairy, no sugar, no alcohol, no caffeine) has made that I almost function as a normal human being again. 

    I'm telling you this, so that you can see that there are ways to 'conquer' this disease.  Sure, it takes determination and lots of effort, LS never really goes away.  You have to always be alert.  But it is possible to make it liveable. 

    Again, do NOT have anything down there surgically removed.  Don't go there. It only will create scar tissue.  And that's exactly what you don't want.   

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    • Posted

      Thank you, I have started the baths with baking soda and I've been reading other posts about the spray after urinating. I haven't found the coconut oil yet. The caffeine thing may be hard and I think during Christmas I did eat a lot of sugar that may have caused this flare up that just won't give so I can see I need to change my diet too. I'm not having anything removed and didn't understand that suggestion to start with. 

      Thanks for the advice 

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    • Posted

      Yes, organic coconut oil.  I don't know (why italics all of a sudden?)  where you live, but here in BC it's available in health food stores, but also at Costco. 
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