Underwear options when lichen sclerosis flares

If it helps, this is the silicone sheeting I found stuck pretty well for me: https://www.amazon.com/dp/B09CYY15JN?ref=nb_sb_ss_w_as-reorder-t1_k0_1_11&amp=&crid=1UHCMJMTE04Q8&amp=&sprefix=silicone+sh

I swear by Duluth Trading men’s boxer briefs.
They have a bullpen pouch in front for men but it perfectly accommodates incontinence shields and
holds them in place. Good selection of fabrics and styles. Have you tried zinc powder like Caldesene for the folds.?

Hi there,
I understand your struggle with lichen sclerosis and incontinence. Boy short designs would indeed help. Glad "Always Discreet" is considering it.

Me too!!!

I had laser ablation surgery 4 months ago for lichen sclerosus that evolved (after 40 years) into VIN II-III (Vulvar Intraepithelial Neoplasia), the whole experience of which I've shared here on Mayo Clinic Connect over the past few months.

You are SOOOOO right about the underwear issue! I experienced excruciating pain at each bathroom visit for 7 weeks, and then trying to sleep comfortably, if I could, with the literally maddening (at times) itchiness at the tail end of the healing...I've had "boy shorts" in my drawers already and they came to the rescue, as much as any underwear could...(preferably the longer version - "mid-thigh length" that the Hanes brand offers (I've found mine at Target in-store and just checked for them online with Target).

Hope that helps too!

Best wishes!

Thank you for confirming that this a real issue that more than just one unfortunate woman is experiencing. We need voices like yours & mine to encourage providers to gain education as to how to treat us in the most effective way & to encourage corporate producers of incontinence management products to know their consumers' needs more fully.

Thank goodness there medical management options available...none are really great tho. Lichen sclerosis has been around for a while...as long as many STD's/STI's...and is treated much the same..."we don't talk about that". Because of the stigma of LS & many other issues that women experience, these are not topics that are discussed freely. Lichen sclerosis is suspected to be an autoimmune disease, but that does not make its name any less frightening to the uneducated/uninitiated.

If we want real answers, we do need to ask real questions.

I look forward to hearing both questions & answers while participating on this forum.

Right on!

Just a caution - for my peace of mind, and maybe some others - May I suggest going forward we not even raise the MISconception of what others may think LS is...because it ISN'T; it has nothing to do with anything other than (and this is the SERIOUS, lifelong part) a long-neglected, minimally-researched skin condition that has no cure at the present time, and can lead to cancer.

Thus, it is not communicable, and there is no responsibility for this condition that can be placed on those living with it.

I know you understand, and - if I may - I think you agree: I just want to not perpetuate misconceptions by repeating them beyond what's been commented on here so far. 🥴

Though I might've worded this more awkwardly than I'd like, I hope - and I think - the message is one all that who do - or will - face LS will appreciate.

My warmest wishes to you, and looking forward to sharing more on this most welcome, and important, forum.🤗

Thank you so much for this @triciaot !! This is a really inventive, creative idea!

I even wondered while going through the excruciating healing process from the laser ablation if there wasn't a way to cover the abladed skin of the vulva with something to reduce, if not completely remove, the extreme pain created by the urine flow? I even mentioned the idea to my gyne oncologist who did the procedure - that being the idea of some kind of protective covering that could be used at bathroom visits, but she hadn't heard of anything like that - yet. And, I must mention, she is the most consoling, compassionate and qualified doctor I have been fortunate enough to be referred to.

So, that doesn't mean it couldn't be created, esp. for a woman's vulvar anatomy, but maybe those of us who find we need something like that in the future will have to "craft" it out of a silicone sheet ourselves - just be sure to use sanitized scissors! 🙂

I will next look at your link, and also hope to see if it includes legitimate source/s for therapeutic silicone gel sheets.

Again, thank you so much! Best wishes to all, and happy to share experiences, and resources I've found along this journey.

Quick comment -
The gel sheets may or may not stick to the vulva area - it should on the labia majora, maybe the labia minora- but not sure about the mucous type skin of the vagina. We might have a lot to learn from burn patients and their recovery process.
I was even wondering whether liquid bandage might form a layer that would protect from the urine?
As a long time camper - who tent camped for umpteen years - we had started using pee jars to make night time bathroom trips easier. A pee jar might be an empty plastic mayonnaise jar or peanut butter jar, held against the vaginal labia to catch the urine, then capped and thrown out. The urine, though, still gets the vulva area wet.
I wonder if you could devise a much smaller urine diverter, devised to fit your body’s structure and urethra. If you’ve ever gotten a close look at the urethra opening it’s really small - and maybe it’s possible to hold a tube against it to direct the urine away? Maybe? I’m thinking a 1” plastic tubing with something like Sugru around the edge to soften it (Sugru is silicone putty, hardens to soft touch, non-toxic, adheres to most surfaces - need to check the type tubing you’re using - and washable, get it at major hardware stores). The problem is you have to get your hand down there every time you pee, and the tube would need to be washed after each use. But if skin integrity is a long term issue, it might be worth it? Maybe?
Sorry, gotta go for now.

I have seen disposable funnels in travel catalogs that women can use in latrines. Those would possibly be a solution.

That could be a good idea with the “liquid bandage” idea. I remember my dermatologist mentioning an alternative to silicone sheets would be “painting” on liquid silicone. Maybe it’s the same thing though.