Hi 👋

I have LS too. My initial symptoms were mainly itching and soreness. I now sometimes get bladder involvement in a flareup - symptoms much like a bladder infection basically. It's extremely frustrating when it happens.

To give you a little hope: I've had the diagnosis for several years, and I do think it gets better. My symptoms are manageable most of the time. I can usually stop a flareup in its tracks by starting treatment at soon as I feel inklings of it coming on. I have a healthy, very active sex life - much more so than when I was younger to be honest 😉 My partner is aware my skin can at times be sensitive, and we have strategies for managing when that's the case. Most of the time, we don't have to worry about it though. I never did get to the point of actual narrowing or needing dilation, but I've heard many women who have had that, and come out the other side to a happier state.

Before I left Reddit, the LS subreddit was relatively active and supportive. You may want to check that out for more advice. I don't think there is a Lemmy community for LS, and probably there are not enough of us to start one 😆

In terms of treatment, the steroid ointment is the only thing that reliably helps me, and it's the only real proven treatment. I assume that's what you are using, right? If so, keep it up, it can take a while to get a handle on it if you've had untreated LS for a longer period. Once it gets under control, you may be able to only use the steroids for flareups, thats what I do now.

There is a another treatment that works for some people - Tacrolimus - but I've never tried it myself. I believe it's an immunosuppressant cream or pill, you could try asking about it if nothing else is working.

If the treatment does not help at all, I would go back to the doctor to confirm your LS diagnosis - it can often be a bit iffy to actually diagnose, and gets mixed up with other things. If steroids don't work, it may be something else. Did you have a biopsy done to confirm? If not, probably good to get one, even if it's not exactly fun.

In terms of tips, honestly the main thing I've learned is that my main trigger is stress. I can't always avoid that, since life happens. But I've put in place stress management techniques, and try to allow myself rest and recuperation when I need it. That's the only thing that has helped reduce flareups.

Hope this helps a bit. Feel free to ping me back if you have questions.

I've never heard of this until now, so I searched for it. This is a well-trusted website among practitioners and public alike, maybe it can help? https://my.clevelandclinic.org/health/diseases/16564-lichen-sclerosus

I'm very sorry to hear you're experiencing this, it does not sound fun. I wish you the best, and please post back for others, if you find something that works for you. Thanks!

Oh my god this sounds awful, I'm so sorry you're dealing with it. Huge digital hug for you (I hope this is the right emoji) 🙇🏻‍♀️

Hi wildflowertea I'm really glad you've posted here, it's a really important issue that's having a massive impact.

Certain parts of our body are really symbolic to us, they're personal, and have great meaning. We use them many times a day for really private stuff, and yours are painful, narrowing, cracking and there's blood. That's rough and really distressing. It's no surprise your libido isn't happening and you're dreading touch or sight of it.

You've been dealing with this for ages, and finally got a diagnosis. You've put a lot of time and effort into hygiene, clothing and exercises but you're not getting the results you need. That's just hard, and i really feel for you.

I'm afraid I don't have any advice for you, but I'm here listening. Keep reaching out you've got your siblings here for you anytime and endless hugs 🫂 🤗 🫂