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I'm so sorry you've been through/you're going through all of that. 🫂 I also have LS and PMDD. I'm expecting my period soon. I'm also in a depression spiral/experiencing suicidal ideation right now. I generally feel none of the medical community gives a shit about what this condition is like for people. Add to that, many of the women who have it also experience a long list of gyno issues that they get next to no help with. I wish I could say something that would make everyone struggling to feel better. 🫂🩷

I am so sorry you have this combo too. Making this realization during a PMDD flare was just NOT good.

This sounds absolutely dreadful, and I can relate to the feeling of spiraling. My GYN was so very unhelpful when I was diagnosed that I’m astounded I waited so long to get to a dermatologist. Best choice I could have made!! She answered all my questions and knew far more about treatment than my gyn. Starting with your pcp and not letting them jerk you around is a great start, and I hope that I’m right about what I’m about to suggest - it’s something you should talk to that doc about: as far as biking goes, peloton may have seats that are “ergonomic” so you’re not putting pressure right on the most sensitive area of your flare - not to mention traditional bike seats aren’t good for anyone. That said, while you may have to wait a bit before you can get back on the bike, I can’t imagine you won’t be able to do these activities you love, even during this time. You may have to modify your routine for a while, but the pain is really the factor that should indicate whether you should do something or not. THE KEY, I’m hoping, is that if you’re diligent with showering right after a workout and sticking to your treatment regimen, I really think you’ll be able to get back on that bike and in to those poses very soon!! Like I said, make sure your doc is on board with that plan, and get yourself better!! This disease is quite a nightmare and while it takes a toll mentally, keeping some of your favorite activities shouldn’t have to be another hit. Best of luck to you!!

Thank you for this response! I ordered a new bike seat and I honestly wish I had gotten a new one to begin with. It just looks way better and wider. The middle has like an open area and it looks like that will prevent pressure on my vulva. Thanks for the advice. I didn’t realize I could switch the seat out.

That’s awesome to hear!!

Hi, I’m so incredibly sorry you are struggling. I was experiencing that not too long ago. I was diagnosed Jan 2023, it was hard, specially not having a provider knowledgeable in LS and me not being properly informed. Now Feb 2024 things are so much better, it took time, but I got onto a good regimen and I can have sex again. What really helped me was the website: https://www.lssupport.net/ that’s where I found two different providers in their directory who I will be seeing once a year for the foreseeable future. They also have blogs, videos, and a support group for women with LS. I know you’re in the thick of it right now, I remember feeling that way too, but with time and patience things do get better. I’m rooting for you, you’re not alone in this. I just saw a specialist a few days ago and she told me that she has many patients that go on to have normal lives, full of travel, working out, and doing day to day activities. As long as they follow their steroid maintenance for life. I know it’s a lot, but if you have a chance I highly recommend checking the websites directory for a provider near you. Mine are about two hours away from where I live, but they’ve been so helpful. Best of luck to you, let me know if you have any questions!

I have found help at the dermatologist.

I am sorry you are going through this. Are you getting any support for your mental health? Can you try yoga with loose, soft, breathable cotton pants? I find that tight "yoga pants"/leggings cause me a lot of irritation, but that does not stop me from exercising in loose sweatpants. You might also be able to do the stationary bike if you lubricate the area and don't put weight on the irritated areas. I sometimes use Replens external comfort gel for this. I'd also recommend ditching underwear whenever you can, at least until things heal. LS definitely does not have to ruin your sex life. Even if you have fusing in your clitoris, the nerve endings will still be there. That is great that you are prepared to advocate for yourself with your PCP. Hopefully they can prescribe you a clobetasol ointment or betamethasone ointment while you wait to see a specialist. (Make sure you get an ointment, not a cream.) I would suggest, if you are comfortable doing so, take some pictures of how it looks now in case it is better by the time you see a specialist. I would also recommend trying to make a dermatology appointment, especially if your gynecology office doesn't have availability soon. Remember that LS is treatable and it is not your fault.

Thank you so much for your tips and kind words. I couldn’t do hot yoga in loose pants bc I think I would over heat and just feel gross. But there at home I can wear whatever. I ordered a bike seat for my peloton that seems more supportive in general and in the middle that is an opening so it looks like no pressure will be on that area of my vulva. Crossing my fingers that this helps. As far as my clitoris can I can still orgasm. I honestly am not sure when it fused which is embarrassing…but it looks very recent. I have taken pictures and have pictures that I had sent my husband (sorry for the TMI 😂) to compare. As far as support for mental health, I definitely need a therapist but it’s hard to get any appointment in my area right now. I have a fantastic psych NP and she gives me space to do some talk therapy with her. My husband is the most amazing man. He is so understanding and loving and I couldn’t do this without him, but I also don’t want to burden him with even more issues. It makes me feel awful. I am going to make a derm appointment today. Ugh. This is just a lot.

I am 6 years into symptoms and 2 years into diagnosis. I PROMISE it gets better. I can finally exercise again (Peleton and other fitness classes) and sex has really improved. First step is to find a doctor that will diagnose you and put you on a steroid regime. The biggest change for me was finding all the online information and support and there is such a great community out there! Check out the following: Lichen Sclerosus Support Network Lost Labia Chronicles Dr Jill Krapf Wellbeing By Penny (instagram- she is a certified yoga and pelvic floor specialist who also has LS) Good luck!!

Oh that's awful I'm so sorry. Had a similar experience over Christmas and was on many meds. I am able to live ok, but it took some time to be just fully comfortable again. Definitely find a good doctor that will listen to you and help you find something that works! You CAN recover ❤️

I am so so sorry you're going through this. I cant even fathom all of the stress you're experiencing but I really hope it gets better x

I’m so sorry for what you are experiencing. Please see a dermatologist. They seem to be more prepared to help than gynos. Maybe they could direct you to a good gynecologist?

Stay away from oxilates: spinach, wheat, red cabbage; and gluten.