Newly Diagnosed

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I have just been diagnossed with Lichen Sclerosus and was wondering if I could hear about your experiences using the medication. I am in my 20's and the doctor says that I have a very bad case. I cannot have sex because it is too painful and have probably had this condition for many years. Has anyone seen large improvements using the medication? Are results drastic enough to undo the fuzing? 

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  • Posted

    Hi just wanted to say welcome. Your not alone the ladies on this site give great advice. Personally I've been lucky and had no fusion yet. But I've read some story of success through various cases of treatment or surgery. I think you've got to fight what bothers you most step by step. For me 1st it was the soreness and itching which dermivate helps I'm still trying to get to the maintenance stage. It has calmed down a lot. At the moment I have problems with bruising because I've lost a fair amount of fat due to LS down there so I'm also trying eustrogen cream. It all seems trial and error but I hope you can get some good advice. I would not have been doing as well as I am without these ladies xx
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  • Posted

    Hi Jessica,

    It's really unfortunate that you've been told you have a bad case when you're still so young. If I were your age now, I'd be looking for a way to get in on these stem cell amd platelet treatments that are going on in a few places in the US and in Italy. Nothing's been proven, but they're treatments for patients with extensive scarring that are being tried on LS.

    Maybe if you use the estrogen cream diligently as well as the clobetasol, some reversal of fusing could occur. The woman who's had this site ( http://www.lichensclerosus.net/ ) for ten years says it worked for her, but it took three years. Neither the clobetasol nor estrogen works quickly.

    However, if you stick around here and explore past discussions, you'll find them jam-packed with things we're doing that do work quickly to calm down and prevent bad flare-ups. Top two things to cut down: sugar and anxiety. My LS has gotten quite mild after a year or so on clobetasol, so the flares are mild and only last a day. I discovered that coffee had been loosening my bowel movements, which were wreaking havoc on my perineum and the skin around my anus. Huge improvement since I gave up coffee.

    Look into mindfulness – heightening your awareness of your mental weather really helps you learn to stay balanced so anxiety doesn't turn into physical symptoms. A bunch of us regulars here have recently discovered we're artists – not a big surprise, since many of us are sort of intense characters.

    Do watch this presentation on treatment of LS – Dr. Goldstein explains how LS functions, why we have only steroid cream to treat it, how to make the most of the treatment, and the hope there is in future treatments.  http://www.lichensclerosustreatment.com

    The medication is the only thing we have to reduce the deep-seated inflammation in the 'basement' of our vulvar skin. It's a hard truth that the friction and bodily fluids of sex cause and worsen flare-ups. LS comes in several versions and levels of aggressiveness. If your doctor says you have a bad case, you need to take your role in managing your treatment very seriously.

    Stick around. We support each other when we're bummed and benefit from each other's little victories.

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    • Posted

      Thank you so much for all of your help! I have just got results and am going to the doctor tomorrow to get medication. This is great information for me to take to my doctor and will help me to prepare questions.
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  • Posted

    Shoot, I inserted links that are on the New to LS – start here discussion and the site has nipped my post. It might still appear, but do look at Dr. Goldstein's lecture and the other Lichen sclerosus site.
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  • Posted

    Morrell has explained all very well already.  Like to add - browse through the various topics.  Very helpful is the use of baking soda in your spray bottle rinse after every bathroom visit.  Coconut oil is my extra ingredient to keep all comfortable and more. 

    Be very patient with all.  It just needs time to find your personal routine and way to learn to live with LS.  

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    • Posted

      Thanks for the advice. What does the baking soda help with? Is it mainly for itching? I actually don't really have itching of burning, just pain during sex. 
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    • Posted

      It has been said that post-menopausal LS sufferers are the ones who experience itching. But the baking soda is just a good antibacterial first aid agent. If you only use it in your soaking bath before applying the prescription ointment, that may be plenty. It's all I use baking soda for. Hanny's as old as I am had a dilation procedure. Baking soda helped a lot with her healing and preventing re-fusing.

      Have you started to use a magnifying shaving mirror to self-examine daily? It's hugely helpful to be super familiar with the state of our undercarriage, so we can take action when things crank up. Pain during sex probably means you have some stiffening of the flesh around the vagina that makes it less stretchy. I've started doing gentle finger stretching during my twice-a-week soaks. I've become intimate with the hardened structures around the 'rim' and am no longer surprised that sex was painful. (In our sixties my husband and I haven't minded abandoning penetrative intercourse. I've had lots of sex and two babies since I got LS in my early twenties, but it seems I have a mild, slow version.)

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