u/Individual_Wave9183

My clitoral hood is fused to the glans, and where the prepuce would normally have an opening is scarred shut. All of this seems classic LS according to anything I've read.

Throughout treatment I've noticed my residual hymen starting to stick to my labia minora. I've always managed to undo it with clobetasol. I can't pull it apart manually (without an amount of force I'm not comfortable with) it looks kinda "sticky" where it wants to fuse. Sometimes there's a sort of almost translucent string that looks like it should be something I can wipe away but it's actually attaching the hymen to the labia. I rub the clob in there and it's gone the next day.

I haven't read anything about this as a sign of LS. Does anyone else experience this?​

I'm 44 years old and not post partum. My prolapses have worsened and I think I've developed a new one. I'm not in pain really. Just uncomfortable. I don't feel safe doing a lot of things I'm responsible for and things that I love.

I would sew up my vagina in a second if it meant I could keep my bones from turning to dust through weightlifting and attend my kickboxing class again. If it meant I didn't constantly feel my pelvis and vagina and worry about bending down to do the laundry or weeding the garden.

I have only been dealing with this change for about a week and I see my PT tomorrow.

Is it crazy to fantasize about literally obliterating my vagina right now?

I just started twice a week maintenance a few weeks ago and was feeling really good. I noticed last night that my residual hymen is wanting to fuse to my labia again, so I put clob on a couple days early.

Do I have to go back to daily use again? If so, for how long? Initially I was prescribed once a day for 3 weeks then twice a week maintenance.

I DON'T WANNA!

I didn't get instructions from my derm as to what to do in this case. I might be able to get an appointment next week, but not for a couple of days at least.

I have a PT appointment on Monday to show her my recently worsened prolapse. I keep reading about symptoms and often see "dragging" pain mentioned.

I don't know what that is. If I had experienced it, would I just know?

Can anyone describe what is meant by that in any further detail?

Thanks

So, I had a Stage 1 prolapse (cystocele and rectocele with the prolapsed tissue inside the vagina) that has progressed to stage 2 within the last few days (prolapsed tissue is at the vaginal opening or within 1cm beyond it, in my case it is flush with my residual hymen as far as I can tell).

So, tonight I will be applying clob. Obviously I'm not going to intentionally apply it to exposed vaginal mucosa, but it's bound to pick some up from my labia.

Does anyone else here have to deal with a Stage 2 or more prolapse on top of treating lichen sclerosis?

Vaseline is probably the best thing but it causes pretty much instant yeast overgrowth on me every time I've tried to use it as a barrier. Do I just have to tolerate that in this case?

I see my pelvic floor physiotherapist on Monday and I'm hoping I'm a good candidate for a pessary to hold everything inside.

I've been feeling pretty comfortable for a couple weeks finally and now my insides feel like they're falling out of me and I have to try not to put an ultra high potency steroid on my actual vaginal mucosa.

I had a level 1 prolapse before but it was asymptomatic (mostly). I saw a PT because I had a period of mild constipation and mild fecal incontinence. She said I had some bladder prolapse and a small rectal prolapse (which possibly explained the fecal leaking). That problem was transient and I was otherwise asymptomatic. I had symptoms of a hypertonic pelvic floor.

I'm 44 and I haven't had any children.​

Fast forward to a few months ago I was diagnosed with lichen sclerosis. I also have undiagnosed neurological issues. I started a low histamine and an autoimmune protocol elimination diet. It was a bad idea. While I got some information from it (eggs and dairy are bad for me apparently), I started to have body wide skin effects that I just blamed on the steroids for lichen sclerosis. I became afraid of food and still eat pretty restrictively.

I did start supplementing with some things after a few weeks, but I'm learning what I have been taking isn't optimal. I had some blood work and my iron saturation is quite low (17%). According to chat gpt I'm deficient in collagen building nutrition based on my diet, and it is having significant effects on my skin and connective tissues.

Now I feel and see the bulge at the opening of my vagina and my cervix sits significantly lower. My pelvic region just feels heavy and uncomfortable. It's not painful exactly. Just feels like something is very wrong.

I have an appointment with my PT on Monday.

I did this to myself, but I can only go forward now.

Any advice on what I can do to keep things from getting worse while I rebuild my collagen synthesis capacity and anything I should do or not do between now and consulting with my PT on Monday?

Thank you.

Um... you guys. My butt crack is getting hairy.

I use clobetasol on my vulva and tacromilus on my butt crack.

I know I stopped growing hair in places down there several years ago which I thought was just hormones changing as I was around 40. Maybe it was the LS though?

So, either hair that I always had is growing back (I never really studied my butt crack until recently), or I was absorbing enough clob to get some hirsutism on a nearby area, or because I was applying the tacromilus after the clob I was distributing a little bit of clob back there too, inadvertently (but that would have been such a tiny amount!). It's sparse, but there are some dark long ones along with tiny fine ones. I have some super fine baby hairs growing around where my perineum is that I attribute to clob migrating there and having that non-androgenic hair growth side effect as well.

I think now that I'm using clob more like twice a week that I shouldn't have any non-localized effects, if that's what it is. The search engine AI thing (whatever that's called) says it's probably from that first month when I was using it daily+ and had some systemic absorption. I also started treatment with thinner than normal skin in that region, so my ability to absorb the medication is probably heightened.

I know you're going to ask: I don't use a lot of clob. I don't measure it anymore but definitely less than the fingertip measure, certainly not anywhere near a pea sized amount. I was applying the ointments twice a day for 2 weeks, then every day and sometimes twice for 2 weeks, and then every other day for 2 weeks and then every third day for the last 2 weeks roughly.

On the plus side, I'm feeling more comfortable, but I don't feel like I'm out of the woods yet.

It's the weirdest thing. I have severe clitoral phimosis and my labia minora are partially resorbed especially at the top toward my clit. If I'm a little bit irritated from some discharge or sweat, it looks like I have no labia minora at all and my skin looks like it's pulling and twisting in a way that's hard to describe. My vulva takes on a sort of grotesque shape.

After rinsing the irritant off, my vulva immediately looks more relaxed and has a normal shape with some discernable labia minora.

I'm only about 7 weeks into my diagnosis and treatment journey so I'm still figuring out these mysteries of my body. At first I thought I was having treatment setbacks whenever it looked weird. Now I know I just have to rinse often and baby my skin. I might be overdoing it with the emmolient in the hot weather. She starts growing a bit of yeast when she can't breathe.

Is this a common thing? I wish I could post pictures so you could see how different it looks in intervals of mere minutes sometimes.

So all the quick facts about LS that you'll find online say that it is most common in menopausal women and prebuscent girls. Based on the demographics of a lot of posters here, that doesn't really check out. I know that could have more to do with the demographics of Reddit than the demographics of LS, but if you were diagnosed after menopause, do you think you had signs or symptoms of it before menopause? The timing of diagnosis isn't necessarily the same as the timing of disease onset. Just curious. Thanks!​​​

I was so excited when I was finally diagnosed and starting treatment 7 weeks ago. In the first 4 weeks I made a lot of progress and starting looking pretty normal.

For 2 of those weeks I was on Valtrex getting ahead of a herpes outbreak (2 outbreaks I guess) starting at the prodrome stage. Worked like a charm, no problem. A couple weeks later I didn't catch it at the prodrome stage and now it's the last day of my meds and it's not completely gone. My doctor has me starting a prophylactic course tomorrow, but I'm scared that it's not an appropriate dosage considering the immunocompromised tissue and resistant viral strains developing from inadequate treatment in the immune compromised. I know they worry about that in people who are systemically compromised, but it stands to reason that local immune compromise could create the same conditions of high viral replication plus selection pressure.

Then I had my period. My period blood has never irritated me before but apparently it does now. I don't use tampons because of vaginal dryness. I've ordered a Nixit menstrual disk for the next one.

Use vaseline as a barrier you say? Okay, tried that. Now I have some kind of irritating dysbiosis. I've taken 2 OTC fluconazole doses starting 7 days ago. It had improved, but as soon as I start to sweat, or put a bit of coconut oil on before a walk, my vulva still pretty much starts growing mushrooms. I'll get someone to culture that and go from there.

The condition of my vulva has taken a step backwards with these added infections. I'm super tempted to take 3 weeks off the clob so my immune system can help out with dealing with them. Talk me down from that ledge if you want. I'm not even that uncomfortable. I'm just constantly at least a little bit uncomfortable and it's really starting to wear on my morale.

I can't be the only one here who has both of these problems but it seems rarely discussed on here.

I'm 5 weeks into treatment and about 2 weeks ago I had those familiar prodromal herpes symptoms for the first time in a decade. I mentioned to my doctor that the clobetasol was suppressing my immune system locally and maybe it would be good to do a longer low dose preventative course after the acute course since I was going to be using the clob for at least 3 months.

I don't know if he disagreed with my logic or if he didn't appreciate me having ideas as to my own treatment, but he said he'd prescribe the 7 day course and give me refills for if it came back.​ Well it came back within days of finishing it. So I got my refill from my pharmacist who was reluctant to refill it again so soon and told me if it happened again to see my doctor about a referral to a specialist. Well, once again I felt it coming on within days of finishing that course but I just decided to give it a few days to see what happened, and now I have several full blown herpes lesions (albeit less inflamed than they otherwise would be due to the clobetasol).

I'm super bummed out about it because during those 2 courses of antivirals I really thought things were looking good and now it just generally looks bad again and now I have to let my doctor figure out how these two diseases work together to create a vicious cycle (I'm tapering the clob now so maybe my immune system can attack the herpes but also it could trigger my autoimmunity so then I could ramp up the clob again for the LS and then just keep a herpes infection going etcetera etcetera).

I found a single case study online with an elderly woman who did a 30 day course of both antivirals and clob, so I feel vindicated, but it costs 50 bucks to download and print it.

If anyone has any advice about how to treat these things or how to manipulate your GP into prescribing the treatment that you know you need because you're more of an expert on your condition than they are while making them think it was their idea, I'm all ears.

So, I've seen some recommendations for products from Italy and Australia that are specifically formulated for use on the vulva, but I'm in Canada so it would be onerous to aquire those. I've looked into products for use on the face that have ceramides and lipids but even the fragrance free alcohol free ones have glycerin in them, which I know is irritating to my vulva.

I'm using single ingredient oils right now. So far I've tried coconut oil and jojoba oil.

Anyone have a recommendation for a more comprehensive sensitive vulva compatible skin product that's available in North America?

I'll even hear your favourite grocery store or healthfood store emollient since I'm still experimenting with those in the mean time.

Yes, I am using clobetasol as well.

Thanks!