A total of 2 reviews of this product on Reddit.
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Deal link: Amazon
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Hey there! I am a woman who was diagnosed about 10 years ago, in my late teens, through a biopsy. My inner labia are almost completely gone and I have noticeable scaring around my clitoris. You should know that it gets better, and I’ve maintained a good sex life (yes I still orgasm and no partners have ever cared about the physical effects) with minimal flare ups since getting the disease under control. Here’s what’s worked for me:
– Topical steroid treatment DOES work and it’s the best treatment we have right now – keep with it daily until the itching and pain goes away. After that, use once a week or so.
– Especially while dealing with a flare up, stay moisturized all the time and avoid underwear. Coconut oil and unscented lotion work great. Coconut oil has also been a great lube during sex (with LS – lubricant during sex is not optional).
– Shaving (while not in a flare up and I recommend using an electric razor so cutting yourself is less likely) can help.
– Only wear 100% cotton underwear. These have been good for me.
– Avoid fake sugar sweeteners – they freak out the immune system and can cause flare ups … ie Acesulfame K (brand names: Sunett and Sweet One, Advantame, Aspartame (two brand names: Equal and Nutrasweet), Neotame (brand name: Newtame), Saccharin (two brand names: Sweet ‘N Low and Sweet Twin), Sucralose (brand name: Splenda)
– Taking high doses of vitamin D every day helps (recommended by a friend who has Lupus and LS). I take two pills a day
– Having an alternative cream on hand to use in between the steroid like this one is great (it works but smells and stains underwear – use black undies). I can vouch for the Creme Complete!
– Avoid damaging the area further – you know your body… careful with rough sex, wearing a harness for too long, too long on a bike.. etc. During a flare up, do everything in your power not to itch! For me, knocking myself out at night is the key (edible or sleeping aid).
– Seeing an OBGYN and a dermatologist is a good idea. Both have had helpful recommendations for me over the years. I’ve been told to purchase estrogen cream as that can be helpful in addition to the steroid – still on my list of things to do with my new insurance.
– Don’t be afraid to ask for help. This is a deeply personal disease to be diagnosed with. Most days, after this many years, I don’t even think about it – but having a mental health resource is always a good idea. Yay therapy! If you are employed full time, see what is included in your EAP / health plan before paying out of pocket.
– Know you aren’t alone! I recently found this site http://lichensclerosus.org/ and have found it helpful so far.
