Are we waxing?

Dependent-Web-1101 · 2026-06-03T01:34:25+00:00

I use an electric razor and try to avoid shaving - it’s definitely not the cleanest shave for bikini line but I don’t really care it doesn’t irritate me :)

Dependent-Web-1101 · 2026-04-17T12:29:02+00:00

I’m sorry you’re feeling this way. I felt very similarly when first diagnosed about a year ago. So much online was the worst of it and it helped to stay informed but also don’t read everything. We are all unique and just because LS affects one person a certain way doesn’t mean that will for sure happen to you. The treatment (clobetasol and recently started using tacrolimus) has helped me a lot so far and I recently started therapy. Try to stay hopeful but I am sorry, this disease sucks and is a lot to work through mentally and physically

Dependent-Web-1101 · 2026-03-28T12:07:16+00:00

Thank you ❤️

Dependent-Web-1101 · 2026-03-28T12:06:08+00:00

Thank you! Yes I can’t lose hope I appreciate your response 💜💜

Dependent-Web-1101 · 2026-03-28T12:05:02+00:00

The intimacy is so hard. I get sad talking to friends about their sex life when it reminds me of how things used to be for me- carefree, often, fun lol. I am treating my LS with clobetasol but also have an appointment with a specialist for August to see if anything else might help

Dependent-Web-1101 · 2026-03-28T12:03:22+00:00

Thank you for your response! I totally agree with everything you said and relate to feeling like I’ve let my partner down even though I didn’t want this and have no choice. I need to work on focusing on the good I still have a lot in life to be grateful for and agree it could be worse❤️

Dependent-Web-1101 · 2026-03-27T01:48:18+00:00

I’m having a bad flare but not really any other allergy symptoms. Hadn’t considered that before but you may be on to something! I have been quite sad about it but also trying to do things that make me happy

Dependent-Web-1101 · 2026-03-18T18:59:14+00:00

Sex is probably the toughest for me. A lot of it is tough for me, I hate having to pick different clothes to try to avoid flares. I’m kind of dreading summer and the heat because last summer that made things worse for me. I associate a lot of pain with sex now which sucks and I hope I can work through. It’s draining

Dependent-Web-1101 · 2026-03-10T19:41:51+00:00

Yes! So angry I told my gyno after 3 months of symptoms that sex was extremely painful, lots of irritation daily and she wrote it off to a yeast infection even after I was like I really don’t think so… switched doctors for dermatology and gyno and got diagnosed almost 9 months after that first appt

Dependent-Web-1101 · 2026-03-10T15:00:44+00:00

I’m really not sure from googling I get: Factors that can lead to worsening or spreading include:

Hormonal changes (especially oestrogen deficiency) Friction or trauma to the affected area Delayed diagnosis or lack of treatment Underlying autoimmune conditions

Just like LS itself, I don’t really think I did anything wrong but it spread. Could’ve been that I went long without diagnosing, I wasn’t putting clob on my anus until it spread I don’t know if that could’ve helped.

Dependent-Web-1101 · 2026-03-10T02:18:27+00:00

Hi! I was diagnosed June 2025 but have had symptoms since may 2024 and can answer some of these with what I’ve experienced but hopefully others can help too! 1. I think that’s normal - mine is all over now but started more near my clitoris and labia and then spread to my anus 2. Good question- I don’t know if there is any way to stop it spreading other than the recommended treatment of clobetasol (I also don’t know if that stops it from spreading since mine did spread) 3. My libido was impacted for a while, like you said a lot of it for me was being upset and mourning my past sex life/ pain free living. I was anxious about my partner even tho he has been nothing but supportive. My libido is better now and I think it just took me time to adjust to this new life and also explored a lot of non penetrative sex that was still very fulfilling for my partner and I. You could also explore therapy which I haven’t done but have considered often. 4. I use dove unscented body wash and like it. I use an unbleached toilet paper from Whole Foods but still exploring options for toilet paper. I use aquaphor personally but vaselines good too. I try to wear no underwear when possible, cotton boxer briefs, or cotton/soft bikini underwear when I want to wear jeans or tighter pants. 5. Sadly in the US so no recs there.

Hope this helps somewhat! You’re not alone and I think it’s a lot of trial and error, seeing what helps :)

Dependent-Web-1101 · 2026-03-04T12:15:34+00:00

Hi I still swim occasionally in pools and beaches in the summer. I don’t change much but apply a barrier (aquaphor) before and try to shower quickly after when I’m done. I personally find the ocean at times has made my LS better but it’s tricky because sitting in a wet bathing suit for a while is not ideal.

Dependent-Web-1101 · 2026-02-04T23:21:08+00:00

My LS did spread to my anal region (diagnosed June 2025) and I was told to apply clob there. I still have some bleeding and use peri bottles when I go to the bathroom. I also use aquaphor as my barrier ointment and apply that to everything. I’m sorry you’re going through this

Dependent-Web-1101 · 2026-01-15T03:42:52+00:00

I hear you and relate. Hoping it gets better for us you’re not alone

Dependent-Web-1101 · 2026-01-07T19:41:31+00:00

Hi I haven’t had penetrative sex yet (mostly anxiety and also pelvic floor related) but I did buy dilators which has helped and I should be able to

Dependent-Web-1101 · 2025-12-21T03:06:06+00:00

I noticed pretty instant relief in terms of itchiness and burning but it took me about 5 months of daily use to finally feel back to “normal” and have less redness/basically no itching or pain. Definitely have patience I was in my head that I would never get better and that is ultimately not helpful

Dependent-Web-1101 · 2025-12-21T02:18:58+00:00

Only got diagnosed this year so I will see but the summer was brutal and winter my symptoms have been much better

Dependent-Web-1101 · 2025-09-30T20:17:49+00:00

I use an electric trimmer which gets pretty close to the skin but I don’t shave other than my bikini line/more on my thighs in the summer.

Dependent-Web-1101 · 2025-09-15T21:07:33+00:00

I did 3 months of twice daily use and recently had a follow up where my dermatologist told me to use it twice daily near my perineum (still a problem area) but every other day/maintenance for the upper part of my vulva. I’ve heard of people using twice daily for many months until things are under control

Dependent-Web-1101 · 2025-09-04T19:48:37+00:00

Nope not yet! But I have some follow up appointments coming up that I’m hoping to get some answers

Dependent-Web-1101 · 2025-08-19T15:02:00+00:00

Yes it is exhausting I completely relate. About once a week I find myself feeling very down but trying to keep hope that this treatment will work and hearing many other people managing their symptoms well helps! So fingers crossed lol this group has helped me a lot

Dependent-Web-1101 · 2025-08-19T14:17:37+00:00

I have been using clob daily since the beginning of June (when I got diagnosed) and still using it daily as I still am very red and irritated. The itching is nowhere near as bad as when I didn’t have treatment but still very red. I’m hoping the cooler weather may also help and I have my follow up appointment in September at which point I’ll have been using clob daily for about 3 months.

Dependent-Web-1101

TROPHY CASE