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Lichen sclerosus nightmare (NSFW)
(slrpnk.net)
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this post was submitted on 08 Oct 2025
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Thank you so much for taking the time to write this.
I myself have just started having a more active sex life after years recovering from some awful experiences, and this feels like such a slap on the face. My partner is really patient and shows more kindness to me than I do myself. It is simply so hard to find any kind of strategy when your body is working against you in these awful ways.
I am so glad you've found a rhythm and your main trigger. I suspect it is emotional distress for me, which probably means I should finally look into mindfulness after postponing it for ages...
I'm using the steroid cream, an oestrogen cream, and a moisturising cream. Honestly, I put fewer creams on my face than I do down there... No biopsy for me, though. I find that odd because my gynae seems capable and yet fumbling around at the same time. I'll definitely suggest it on my next appointment. Thank you for the reminder!
Do you have to apply the steroid cream every week? I've read about people who are now more stable and only need it during a flareup, and it sounds like a dream. I was doing once a week with not super good results, and I'm now doing an intensive treatment due to a flareup last week, and it all feels so hopeless.
Again, thank you so much for your reply. It makes me feel less alone.
I've only ever used the steroids, so I'm not sure about the estrogen and moisturizer helping, but if you gyn prescribed them, there is probably a reason.
While you have active LS, you definitely have to use the steroid more than once a week! It's daily, even twice a day, to get things under control. But I think you are doing that now? And yes, I now only use it for flareups, not every week. It took a while to get there, so hang in there 😊 but it is possible..
As well as getting a biopsy done, which I definitely think is a good idea, two other things I wanted to mention:
I never had any luck with the steroid cream - only the ointment works for me. I think it's because it's more water resistant, so it stays in place far longer. It's also what's recommended for genital area use. You may already be using the ointment, but worth checking in case not?
Personally, and I have heard this from others with LS, I've had better luck with dermatologists than gynecologists. LS is mostly a skin condition, it just happens to be the skin down there that's usually affected. So in many cases, dermatologists may be better equipped to help, and may have better knowledge of the issue. Not always true I'm sure, some gyns are very knowledgeable. Just something to consider if your gyn is indeed a bit confused.
And great to hear you have a supportive partner. This helps a lot in my experience. Hang in there, you can get to a good place I'm sure of it. LS may always be a part of your life, but it doesn't have to ruin it.