this post was submitted on 08 Oct 2025
33 points (100.0% liked)

WomensStuff

683 readers
170 users here now

Women only trans inclusive This is an inclusive community for all things women. Whether you're here for make up tips, feminism or just friendly chit chat, we've got you covered.

Rules…

  1. Women only… trans women are women, and transphobic or gender critical talk isn’t allowed. Anyone under the trans umbrella (e.g. non-binary, bigender, agender) is free to decide whether a women's community is a good fit for them.
  2. Don’t be a dick. No personal attacks, no aggression, play nice.
  3. Don’t hate on groups, hatefilled talk about groups is not allowed. Ever.
  4. No governmental politics, so no talk of Trump actions etc. We recommend Feminism@beehaw.org for that, but here is an escape from it.
  5. New accounts or users with few comments may have their posts removed to prevent spam and bad-faith participation.

founded 7 months ago
MODERATORS
LadyButterfly@lemmy.world
CheeseToastie@lazysoci.al
foxglove@lazysoci.al
LadyButterfly@piefed.blahaj.zone
dandelion@piefed.blahaj.zone
33
Lichen sclerosus nightmare (NSFW) (slrpnk.net)
submitted 1 week ago by wildflowertea@slrpnk.net to c/womensstuff@piefed.blahaj.zone
11 comments fedilink hide all child comments
 

I've had candidiasis-like symptoms for over a year. Creams to address it calm them but as soon as I stop, the whole party starts again.

Finally got a diagnosis: lichen sclerosus.

That hasn't provided any relief though, because I've been on treatment since August and I am not even close to a point where I can say I am stable – even following the treatment to the T, and all the advice about hygiene, clothes, dilation exercises, etc.

My libido is in shambles and I dread looking or touching there. Pain, burning, narrowing of both vagina and anus, blood, cracked flesh... How am I supposed to live with this?

I am planning on getting pelvic floor therapy, but cannot afford the expense right now so it'll have to wait a few months.

Is there anyone with this in the room who can provide a semblant of hope...? How long did it take for you to find balance? Any tricks?

Digital hugs are more than welcome too...

you are viewing a single comment's thread
view the rest of the comments
[–] wildflowertea@slrpnk.net 4 points 1 week ago (1 children)

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.

[–] Monkyhands 3 points 1 week ago (1 children)

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:

  1. 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?

  2. 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.

[–] wildflowertea@slrpnk.net 2 points 6 days ago

My skin breaks very easily, so I got the prescription for the oestrogen cream to help strengthen it. The moisturiser is helping enormously with the itching too. Got two recommended and both are keeping me as sane as this whole thing allows...

I thought once a week was too little too! I've gone undiagnosed for a year so I expected it'd take a longer treatment to stabilise the LS, but my gynae set me up on a four-week one where I gradually scale down from twice a day to twice a week, after having tried once a week and finding out it was too little.

I think what you mention about the dermatologist could be key here. I won't say my gynae doesn't have a clue what she's doing, but I think she may be underestimating my current situation...

And you are completely right. It is an ointment and not a cream!

Thank you again. I'm trying to stay positive and be kind to myself, but it is hard when your immune system is constantly throwing curveballs at you.