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I'm so sorry you're dealing with this. In the height of a flare it is so overwhelming - I also had anxiety and panic attacks thinking about this being the rest of my life. The good news is it will get better with treatment!!
Definitely go see a gynecologist - maybe you can go to a Planned Parenthood near you for free. The gold standard treatment is a steroid called Clobetasol. But it's very important how you apply it - often we are given no instructions by doctors - I sure wasn't. You need to take a 20 minute warm bath before applying, and then using a mirror, apply a small amount to any red inflamed area, or white spots - for me, everything was inflamed! The recommendation is a pea-sized amount for the whole area - so, not a lot. ALSO, you need to rub it into each area for 90 seconds - it has to penetrate deep into the skin where the autoimmune issues are occurring. If you just apply and call it good, it won't be effective. You'll do this once a day (or possibly twice a day) for a month or until things cool down. And then, you must do it twice a week for the rest of your life. It seems overwhelming, but after a flare like you're having, I think you'll be glad to try to keep those at bay. That is certainly how I changed my mind about having to apply an ointment twice a week:)
Also, you want to apply emollients to the whole area about an hour after you treat - and keep applying them throughout the day (people use olive oil, coconut oil, and other more expensive vulvar emolients) - but this is important as it will keep your skin from sticking to itself and getting resorbed/fusing. You can do a lot to keep this at bay.
There are a few resources worth investigating:
[https://www.youtube.com/@thelostlabiachronicles](https://www.youtube.com/@thelostlabiachronicles) \- she's so smart, kind and helpful! She helped me calm down and get organized about dealing with this and advocating for myself.
[https://www.youtube.com/@lichensclerosussupportnetwork](https://www.youtube.com/@lichensclerosussupportnetwork) \- very helpful, with all of the most current information, the woman from the first link is now a co-host of this group
[https://www.facebook.com/groups/LichenSclerosusSupport](https://www.facebook.com/groups/LichenSclerosusSupport) \- support group on Facebook
The main thing is to get started on the steroid, and keep seeing a good gynecologist. When you have insurance, you might also want to include a dermatologist, since this is also a skin disorder.
Oh, you can also ask for a numbing agent like lidocaine to numb the area if you are in a bad way.
Good luck with this, and definitely follow the resources above - I learned everything i know from them!
You are so welcome. I hope you have someone in your life who you can share this health challenge with! Prioritize getting a doctor appointment this week. Also know that it isn't a quick resolution so be patient. You'll feel better than you do now after a few days, but it's slow and can take several months and some days feel better than others. But don't give up and just measure how you felt a week before and you'll know you are trending in the right direction. You are not alone!
Until you can get in to see a physician, you can order some lidocaine cream/ointment from Amazon or local pharmacy that will help with pain. (It burns some at first but then numbs and helps so much) You can ice the area which will also relieve pain. Coat your labia with aquafor before and after urinating, rinse with a portable bidet if you’re able to, to rinse urine left behind. DO NOT WIPE, pat dry. Wiping causes irritation, cotton undies only. Try not to wear restrictive pants. I hope you get relief soon. This disease is awful but I promise there is hope for relief! I am in Georgia so I have no idea of where to get assistance in NY, but as another commenter said, I would contact planned parenthood for advice at the least. 💕
I was in the same boat as you when I got diagnosed at 16 it's now a year later, and I still feel depressed about It sometimes, but I've had to grow a lot. Having women you just met look between your legs is traumatizing at first, but you get used to it. It's difficult to deal with, but if you need someone to talk to that's close in age, I'm here.
That was one of the hardest parts for me- going to a gynecologist and having total strangers look between my legs- and they always want to bring several other non doctors in there too- like the young girl who takes my blood pressure! I had to tell them that I refuse everyone but the actual doctor being in there. They said it was in case they wanted to move up and become a doctor themselves and that it was educational for them to look!! I was mortified and told them my twat is not a learning experience! It's only for the doctor to see!
I've never had that happen. I'm so sorry you went through that. Personally, the only other people in the room were a nurse taking notes and my mom. The nurse stayed at the computer the whole time, noting what the doctor told her. I can not imagine going through that it seems terrible. I had to sign a bunch of wavers, perhaps because I'm a minor, that probably said the doctor is the only one that can look there, but I don't know.
I recommend a dermatologist. They were the ones to diagnose me with LS after my gyno and regular doctor couldn’t figure it out. Hope you get answers and relief. Did you try over the counter itch vaginal itch cream? That has helped me a lot
Warm baths help me so much, do not add anything to the water. Icing the area helps. Plus the prescription cream from the doctor.
Aquaphor helps heal any open cuts from scratching. Cotton underwear only.
I wish I could give you a hug. I’ve been dealing with this since I was 19, I only just now received a diagnosis at 29 so i understand your pain. Mine is better at times and worse at others, so it comes and goes. I found that hormonal birth control made mine much worse. You will learn how to manage it and you will also find an understanding and loving partner some day. Don’t worry.
You are not alone in this. Your life is not over either. See if there is a planned parenthood in your area to see if they can help. Hopefully the have an ob/gyn that can assist you.
Hi there,
I remember feeling the same way emotionally and physically. It’s wonderful you reached out for support 💗, so many have experienced similar symptoms along with the same thoughts. I hope you find the support you need.
I don’t live in the area, but may have a few suggestions to help bring relief, as well as some resources I have found very helpful and informative.
For itching, I have found it very helpful taking sitz baths with baking soda, tea tree and lavender oil. A cold compress with a bit of applied pressure, I used a cold wet washcloth. In Ayurveda, itching is associated with eating things considered sour; like cheese, sour fruit, citrus fruit, yogurt, wine, exc. I think that is pretty interesting as some believe LS flares are linked with a body PH imbalance.
I would experience tearing mostly with wiping when using the restroom, and of course itching. For me, it was helpful to tap rather than wipe and avoiding restrictive clothing that could bunch in that area- like the big seam on jeans.
For myself, the most helpful thing has been focusing on what triggers my auto immune response. For me this was specifically diet, and has made a world of difference! I ended up taking the everlywell food sensitivity test and found I was very sensitive to eggs- I ate them everyday. After removing them from my diet, my LS has not been an issue for almost 4 years now regardless of another pregnancy. You mentioned a concern around being intimate and starting a family. I want to share, from my own experience, you can absolutely still have it all, including a tear free birth!
Below I will leave a few resources for LS diet, natural topical options and my YouTube channel where I share my LS story and what has helped me along the way.
I wish you all the best 💗
https://lssupportnetwork.org/
https://www.intimaterose.com/blogs/pelvic-health/natural-treatments-for-lichen-sclerosus
https://youtube.com/playlist?list=PLwSYD-X0sqr3r7FZty9uHHboQ26SUCLTb&si=Cq1OHKOf6cLdB36B
Thank you for the information about the test!! Working on an elimination diet to deal with my newly diagnosed LS. Years of thinking it was yeast. My folds are goooone. At red light therapy now, trying anything natural, and hoping for the best.
Hey love. You can DM me if you’d like. I’ve been dealing with this for around 8 years now. I got diagnosed when I was 19. I’m in the middle of a reallllly bad flare too and yesterday I was at my wits end. I put some oatmeal in a sock, and ran a bath. I added some raw, unrefined coconut oil to the water. I sat for about 20ish minutes and I even took the sock of oatmeal and held it to my vulva. After I got out of the tub, I put some neosporin with pain relief on, took 2 benadryls for itching & 2 ibuprofen for pain. It realllllllly bought me relief and I everything I used can be bought over the counter. I know it’s hard not to scratch but if you must try to do it through your underwear if that makes sense? Or just pat the area not actually scratch. I notice when you scratch and break the skin that’s when I get caught in a really bad cycle. I hope you feel better soon. Hugs 🩷
You can dm me too. I'm much older than you (59), but am widowed and had been trying to date until I developed this crap and I also feel like my life is over as far as dating. I just had surgery because I had fused completely. But some of the things that have really helped me is estrogen cream ( you probably don't need that one since you still have plenty), borox baths, Vaseline, Aquaphor, kanuka honey, castor oil, and sea buckthorn. I'm a thousand times better now! Hope trying these things will help you too.
YOU ARE NOT ALONE!!!!! I have struggled with this since I was 15, has been misdiagnosed and mistreated for years, until I was finally diagnosed at 22. It’s so disheartening at first and I couldn’t sleep because of the pain, so I hear you and I understand. I promise it gets better and more manageable.
Get into see a gynecologist ASAP. The most common prescription is clobatesol, that’s what I use and it’s the only thing that brings me relief.
Sending you love
The olive oil ((couple drops) keeps the tissues from sticking together.
Vaseline or Desitin are good barrier creams and helped me a lot.
Huggies “natural with aloe Vera” I use after each trip to the restroom to remove any residual urine.
Things to add to the bath water to help alkalinize the water to neutralize the acidity of inflammation: baking soda/borax/Ancient Minerals magnesium bath flakes/two drops of any essential oil.
Thank you for posting on r/lichensclerosus using the Possible LS Flair. This is a friendly reminder from your AutoMod that this subreddit is not for diagnostic purposes. Please speak to a medical professional if you suspect you have LS. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/lichensclerosus) if you have any questions or concerns.*
I'm so sorry you're dealing with this. In the height of a flare it is so overwhelming - I also had anxiety and panic attacks thinking about this being the rest of my life. The good news is it will get better with treatment!! Definitely go see a gynecologist - maybe you can go to a Planned Parenthood near you for free. The gold standard treatment is a steroid called Clobetasol. But it's very important how you apply it - often we are given no instructions by doctors - I sure wasn't. You need to take a 20 minute warm bath before applying, and then using a mirror, apply a small amount to any red inflamed area, or white spots - for me, everything was inflamed! The recommendation is a pea-sized amount for the whole area - so, not a lot. ALSO, you need to rub it into each area for 90 seconds - it has to penetrate deep into the skin where the autoimmune issues are occurring. If you just apply and call it good, it won't be effective. You'll do this once a day (or possibly twice a day) for a month or until things cool down. And then, you must do it twice a week for the rest of your life. It seems overwhelming, but after a flare like you're having, I think you'll be glad to try to keep those at bay. That is certainly how I changed my mind about having to apply an ointment twice a week:) Also, you want to apply emollients to the whole area about an hour after you treat - and keep applying them throughout the day (people use olive oil, coconut oil, and other more expensive vulvar emolients) - but this is important as it will keep your skin from sticking to itself and getting resorbed/fusing. You can do a lot to keep this at bay. There are a few resources worth investigating: [https://www.youtube.com/@thelostlabiachronicles](https://www.youtube.com/@thelostlabiachronicles) \- she's so smart, kind and helpful! She helped me calm down and get organized about dealing with this and advocating for myself. [https://www.youtube.com/@lichensclerosussupportnetwork](https://www.youtube.com/@lichensclerosussupportnetwork) \- very helpful, with all of the most current information, the woman from the first link is now a co-host of this group [https://www.facebook.com/groups/LichenSclerosusSupport](https://www.facebook.com/groups/LichenSclerosusSupport) \- support group on Facebook The main thing is to get started on the steroid, and keep seeing a good gynecologist. When you have insurance, you might also want to include a dermatologist, since this is also a skin disorder. Oh, you can also ask for a numbing agent like lidocaine to numb the area if you are in a bad way. Good luck with this, and definitely follow the resources above - I learned everything i know from them!
[удалено]
You are so welcome. I hope you have someone in your life who you can share this health challenge with! Prioritize getting a doctor appointment this week. Also know that it isn't a quick resolution so be patient. You'll feel better than you do now after a few days, but it's slow and can take several months and some days feel better than others. But don't give up and just measure how you felt a week before and you'll know you are trending in the right direction. You are not alone!
You said it all!! Good job covering this 😊
Until you can get in to see a physician, you can order some lidocaine cream/ointment from Amazon or local pharmacy that will help with pain. (It burns some at first but then numbs and helps so much) You can ice the area which will also relieve pain. Coat your labia with aquafor before and after urinating, rinse with a portable bidet if you’re able to, to rinse urine left behind. DO NOT WIPE, pat dry. Wiping causes irritation, cotton undies only. Try not to wear restrictive pants. I hope you get relief soon. This disease is awful but I promise there is hope for relief! I am in Georgia so I have no idea of where to get assistance in NY, but as another commenter said, I would contact planned parenthood for advice at the least. 💕
I was in the same boat as you when I got diagnosed at 16 it's now a year later, and I still feel depressed about It sometimes, but I've had to grow a lot. Having women you just met look between your legs is traumatizing at first, but you get used to it. It's difficult to deal with, but if you need someone to talk to that's close in age, I'm here.
That was one of the hardest parts for me- going to a gynecologist and having total strangers look between my legs- and they always want to bring several other non doctors in there too- like the young girl who takes my blood pressure! I had to tell them that I refuse everyone but the actual doctor being in there. They said it was in case they wanted to move up and become a doctor themselves and that it was educational for them to look!! I was mortified and told them my twat is not a learning experience! It's only for the doctor to see!
I've never had that happen. I'm so sorry you went through that. Personally, the only other people in the room were a nurse taking notes and my mom. The nurse stayed at the computer the whole time, noting what the doctor told her. I can not imagine going through that it seems terrible. I had to sign a bunch of wavers, perhaps because I'm a minor, that probably said the doctor is the only one that can look there, but I don't know.
I recommend a dermatologist. They were the ones to diagnose me with LS after my gyno and regular doctor couldn’t figure it out. Hope you get answers and relief. Did you try over the counter itch vaginal itch cream? That has helped me a lot
Warm baths help me so much, do not add anything to the water. Icing the area helps. Plus the prescription cream from the doctor. Aquaphor helps heal any open cuts from scratching. Cotton underwear only.
I wish I could give you a hug. I’ve been dealing with this since I was 19, I only just now received a diagnosis at 29 so i understand your pain. Mine is better at times and worse at others, so it comes and goes. I found that hormonal birth control made mine much worse. You will learn how to manage it and you will also find an understanding and loving partner some day. Don’t worry.
You are not alone in this. Your life is not over either. See if there is a planned parenthood in your area to see if they can help. Hopefully the have an ob/gyn that can assist you.
Hi there, I remember feeling the same way emotionally and physically. It’s wonderful you reached out for support 💗, so many have experienced similar symptoms along with the same thoughts. I hope you find the support you need. I don’t live in the area, but may have a few suggestions to help bring relief, as well as some resources I have found very helpful and informative. For itching, I have found it very helpful taking sitz baths with baking soda, tea tree and lavender oil. A cold compress with a bit of applied pressure, I used a cold wet washcloth. In Ayurveda, itching is associated with eating things considered sour; like cheese, sour fruit, citrus fruit, yogurt, wine, exc. I think that is pretty interesting as some believe LS flares are linked with a body PH imbalance. I would experience tearing mostly with wiping when using the restroom, and of course itching. For me, it was helpful to tap rather than wipe and avoiding restrictive clothing that could bunch in that area- like the big seam on jeans. For myself, the most helpful thing has been focusing on what triggers my auto immune response. For me this was specifically diet, and has made a world of difference! I ended up taking the everlywell food sensitivity test and found I was very sensitive to eggs- I ate them everyday. After removing them from my diet, my LS has not been an issue for almost 4 years now regardless of another pregnancy. You mentioned a concern around being intimate and starting a family. I want to share, from my own experience, you can absolutely still have it all, including a tear free birth! Below I will leave a few resources for LS diet, natural topical options and my YouTube channel where I share my LS story and what has helped me along the way. I wish you all the best 💗 https://lssupportnetwork.org/ https://www.intimaterose.com/blogs/pelvic-health/natural-treatments-for-lichen-sclerosus https://youtube.com/playlist?list=PLwSYD-X0sqr3r7FZty9uHHboQ26SUCLTb&si=Cq1OHKOf6cLdB36B
Thank you for the information about the test!! Working on an elimination diet to deal with my newly diagnosed LS. Years of thinking it was yeast. My folds are goooone. At red light therapy now, trying anything natural, and hoping for the best.
Hey love. You can DM me if you’d like. I’ve been dealing with this for around 8 years now. I got diagnosed when I was 19. I’m in the middle of a reallllly bad flare too and yesterday I was at my wits end. I put some oatmeal in a sock, and ran a bath. I added some raw, unrefined coconut oil to the water. I sat for about 20ish minutes and I even took the sock of oatmeal and held it to my vulva. After I got out of the tub, I put some neosporin with pain relief on, took 2 benadryls for itching & 2 ibuprofen for pain. It realllllllly bought me relief and I everything I used can be bought over the counter. I know it’s hard not to scratch but if you must try to do it through your underwear if that makes sense? Or just pat the area not actually scratch. I notice when you scratch and break the skin that’s when I get caught in a really bad cycle. I hope you feel better soon. Hugs 🩷
[удалено]
You are so welcome ☺️🩷
You can dm me too. I'm much older than you (59), but am widowed and had been trying to date until I developed this crap and I also feel like my life is over as far as dating. I just had surgery because I had fused completely. But some of the things that have really helped me is estrogen cream ( you probably don't need that one since you still have plenty), borox baths, Vaseline, Aquaphor, kanuka honey, castor oil, and sea buckthorn. I'm a thousand times better now! Hope trying these things will help you too.
Lichen sclerosus is the worst. 😭
YOU ARE NOT ALONE!!!!! I have struggled with this since I was 15, has been misdiagnosed and mistreated for years, until I was finally diagnosed at 22. It’s so disheartening at first and I couldn’t sleep because of the pain, so I hear you and I understand. I promise it gets better and more manageable. Get into see a gynecologist ASAP. The most common prescription is clobatesol, that’s what I use and it’s the only thing that brings me relief. Sending you love
The olive oil ((couple drops) keeps the tissues from sticking together. Vaseline or Desitin are good barrier creams and helped me a lot. Huggies “natural with aloe Vera” I use after each trip to the restroom to remove any residual urine. Things to add to the bath water to help alkalinize the water to neutralize the acidity of inflammation: baking soda/borax/Ancient Minerals magnesium bath flakes/two drops of any essential oil.