I was just diagnosed today…. Prescribed a cream and was told I “could” get vulvar cancer…. I feel absolutely horrible. I’m already high risk for cancer with other conditions I have. I’m thankful I came across your channel… but I still can’t stop crying.
There is platelet rich plasma (PRP) therapy and stem cell therapy. Both therapies are NOT covered by insurance however both therapies are effective. The stem cell therapy is more long term. PRP therapy is done in lots of clinics because people do it for vaginal rejuvenation. However stem therapy is not done in many places. Dr. Nathan Newman does the stem cell procedure in LA California. You can goggle search him. Lots of women went into remission. Hope this helps!
Feel free to come to our FREE virtual support meetups at www.lssupportnetwork.org/connect or for more personal, 1:1 peer support, I do offer calls which you can learn more about and book at www.lostlabia.com/supportcall Feeling anxious, angry, scared, etc., is so so normal, and we all go through it. I see and hear you, but there is support and hope out there. It's important to follow a treatment plan that is evidence-based like topical corticosteroids. When you use your steroids consistently and optimally, they reduce the likelihood of cancer development and bring that risk back down to baseline population risk. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's UA-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
So helpful. Thank you for sharing all of your learning. Recently diagnosed and you have provided so many valuable insights. Will keep following and absolutely will connect with the various resources you have shared
Wow - your story sounds so familiar! I just recently found a name for it but suffered from it most of my adult life! I remember in my 20s and reading article in health magazine about vulvodynia! Finally, found a name for it during my menopause! We should all get together and firm a group and share our stories online so it could help others💕love and hugs to anybody who is going thru this 🤗
Yes! I'm glad some of my story resonated with you. It's so wild how many of us can go half a lifetime with no name or answer for our pain. I hope you are managing it well, now. We actually do have a virtual LS support group you can join at www.lssupport.net/connect We do this every other Saturday from 2-4 or 7-9pm Eastern Time and it's co-hosted by myself and Kathy of Lichen Sclerosus Podcast. It's totally free, so feel free to join. And thank you for watching, commenting and supporting my content - I appreciate you!
Exactly the same story here. My pcp made me wait 3 weeks for a gyn specialist to diagnose and prescribe, because she was 'unsure', saying it may just be vitilago. She gave me nothing for relief. I just went to the gyn ... and bingo. Yep. Me and the "Clob" are best friends. Those 3 weeks were hell.
So much resonance with your story Jaclyn. Especially being told nothing is wrong followed by the mix of emotions ranging from relief, validating to terrifying on diagnosis. Thank you, it helps so much to know I’m not alone.
Omg this is sooo like my story. Exactly the same, undiagnosed for many many years. Back and fro to doctors, took myself to std clinic. Doctors assuming it's psychological re sex or you are a hypochondriac. Eventually biopsy and diagnosed. I have constant flareups, affects sleep etc. Am mid bad flareup just now and so uncomfortable or downright painful on my nightshifts or when trying to sleep through the day. Hearing your story is almost comforting, just to hear someone else has had the same issues and completely understands how much it can impact on your life in many ways especially with partners etc. Thankyou for sharing so openly. ❤
Hi, Ann. Thank you so much for watching and taking the time to comment. It means the world to me. Ugh, yes yes yes. I also was treated like a hypochrondriac and it felt awful. My new content will be on LSSN's page, so be sure to subscribe over there and watch my new videos - I have some great videos planned for 2023. You can sub at www.youtube.com/@lichensclerosussupportnetwork and, if you are feeling alone, you can consider joining our FREE LS virtual support meetups at www.lssupport.net/connect or sign up for a 1:1 with me if that's more your thing. Either way, you are definitely not alone and it's nice to hear my story resonated with you. With love, Jaclyn
Thanks for sharing your story, it's so brave to talk openly about such intimate issues. And it helps! I got diagnosed recently and I realise how lucky I got walking into an appointment where the doctor recognised it straight away. I believe it's so important to get out as much info as possible. Nobody should get dismissed year after year with legitimate concerns, we all deserve help!
I've read online that this condition is fairly rare, but my amazing gyn Dr. said she sees cases on a semi frequent basis. It was not a mystery or surprise to her at all. A lot of cases go undiagnosed.
@@jazzycat312 I do wonder how many of the "yeast infection" cases I and the women I know have been constantly diagnosed with are actually LS. It's unfortunately still rarely discussed, as it was with endometriosis. Now at least there is a recognition and a proper diagnosis for endo patients not just "pain levels differ, it's just how you experience it".
I am so happy I came across your channel. I have had LS for years undiagnosed until 2014 when it was diagnosed via biopsy. I have had symptoms for over 10 years before that. As a result it has caused Vagimismus making any exam impossible. I use Dermovate twice a week and Hydramol daily. But so fed up of being fobbed off. The tearing is terrible with itching on slightest touch. 😢 Thank you so much as I am changing doctors in 2 weeks and gonna see if the new doctor is better as need to be re referred back to a gynaecologist to set up another plan as my current plan is not working that well. Thank you again. 😊❤
I totally hear you on this. I developed vaginismus as well. I'm glad you are going to get a second opinion because it's not OK for you to suffer like that so long. Not everyone responds well and fast to steroids; some folks need creative doctors who are compassionate, knowledgeable, and willing to try different things in order to get relief. I hope your doctors appointment goes well. Good luck; you got this
Thanks so much for your video! My daughter has these symtoms!! Her doc know but only just ordered some tests for her to have done. No calls regarding the results yet. Thank you for brave information you share with us!!
Thank you for sharing your story! I’m glad you’re Canadian too (Vancouverite here). It took me over 30 years to get a diagnosis! Sex was painful right from the start and for three years straight I thought I had a yeast infection and was prone to them constantly since. Finally last year a proper diagnosis! I have other autoimmune diseases so I’m surprised and choked no one figured it out sooner. Thank goodness I took things into my own hands and asked for a referral to the specialty clinic here. Thank you again and I hope you stay well. ❤️
Oh, hello West coast neighboor! I love Vancouver - so pretty! Which clinic to do you go there? OMG, 30 years is WAY too long. I'm so sorry you had to suffer all those years alone. I totally feel you with thinking you were just super prone to yeast infections - I remember a couple of years in my teens where I just constantly had one (or, I/doctors just assumed it was yeast and kept treating for yeast even though nothing helped). Good on you for advocating for yourself and getting into a specialty clinic. Thank you so much for watching and taking the time to comment. I so appreciate it :)
Jackie, first of all, a huge hug for both you and *****. (I don't want to give your private info out to the world!) You have been so strong along your journey and I have learned so much about this disease, and how you have coped to reach this point. It is amazing to see how people move forward against very difficult odds. I have also learned a lot from your frank discussion. Thank you and I wish you the very best future in all ways.
Aw, thank you so much for taking the time to comment. I appreciate your kind words so much, and I'm glad you've learned a bit about LS on the way. I'm a strong believer in the importance of awareness, which unfolds at every level. The more people that know, the more research we have, the more people get diagnosed earlier, etc.
@@thelostlabiachronicles Jackie THANK YOU. This information just after my diagnosis is both a relief and emotionally devastating. I’ll look into the rest of the pods. This is my 3rd autoimmune disease.
@@amymacleod3494 Oh, I'm so sorry to hear this is your third AI disease. Unfortunately, AI diseases often run in packs. Which others do you have, if you don't mind my asking. Relief and emotionally devasting is an extremely valid way to feel. I felt a similar way too - yes! validation! a diagnosis and then a deep plummet in fear, worry, etc. Feel free to email me at jaclyn@lostlabia.com if you ever need some extra support or want to share your story.
I've just been diagnosed and I really relate to your story so much! It's nice to not feel alone in this. Earlier in my symptoms I had one doctor tell me to take an anti-inflamatory pill and wear a skirt....
Lol... and I'm betting it didn't help! I was just diagnosed last week, after years of confusing flare ups. I thought it was the itch that can accompany pre-menopause, since I knew I didn't have an infection or anything. Years of needless itching and misery for nothing.
Thank you for this. I've had this for around 14 years. It took me 12 to get diagnosed, and it only happened because I was seeing a specialist for my vulvadynia (that I had had for 14 years, also undiagnosed before then) and the specialist realized my inner labia were shrinking. And she asked me questions about my skin and labia, and did a punch biopsy that day. Your story and timeline is almost exactly like mine has. I've been trying for 2.5 years to find out more information, on both conditions. And neither seems to have a lot of useful info. And I've changed Dr's, and changed states, and changed Dr's again, and I'm stuck. My dermatologist and I found a med combo that's improving my skin, but only to a point. I still tear, EVERY time with sex. With exercise and shaving and twisting occasionally. The itch is gone on this treatment, but my dermatologist is stuck with what to do next. My current and only working med isn't safe for life long use, and lichen is a life long condition. I've tried so hard to find other individuals with this, to hear their stories and journeys, to try to find ideas, to feel less alone, anything. But so few people are talking about this from a personal journey pov. Thank you for being one of them.
Hi, Thayer, thank you so much for sharing your story. I'm so sorry that you had to go through something similar as well. It can feel incredibly frustrating, confusing, scaring, and isolating. Sorry to hear about the recurrent tearing; can I ask how you've been treating?
@@thelostlabiachronicles Yes! I'm happy to! I'll list it here, then do another comment with the explanations and progressions. Maybe you'll see or remember something from someone else I haven't tried. Estrogen cream An antibiotic for herpes simplex Clobetasol Vaseline Halobetasol A blend of 2 types of estrogen plus testosterone Baby aspirin and Doxycycline Tacrolimus Epiceram Cyclosporin Mycophenolate Dupixent Back to cyclosporin plus the dupixent I also found an otc lotion that helped soothe my tears and skin barrier more than anything else had. I only put a tiny bit on once every week or 2. It burns for a few minutes then everything feels fine and a little more stable for a few days. That's called ceramedx
@@thelostlabiachronicles Part 1 I've tried a lot of different things over the last 3 years. And I used to think nothing was working because I wasn't getting Dr's who knew enough. But when I started visiting online support groups I realized most people were getting waaay less help than I was. And that was terrifying because, if I've tried more things than most people and still not getting any major long term wins, then the progress I'm at....maybe this is the best it gets then. And I'd had the condition for about 10 years undiagnosed, with just itching and tearing and painful sex (which, found out 14 years in I ALSO have vulvadynia so a lot of sex pain was from those nerves also). But after I got pregnant and had my son, my labia suddenly started to fuse in fast forward. The working theory is when I tried to breastfeed the sudden dip in my estrogen triggered the lichen to take that next step that hadn't been happening before. So my labia got see through level thin, then they were tearing CONSTANTLY, and doing the sticking thing, and I went from normal looking labia to completely fused inner-to-outer labia in less than a year. And I didn't even know it was happening until it was mostly already fused. I'd had no idea that could even happen. And so I didn't get diagnosed or start any kind of treatment until the fusing had already started. The first thing my ob tried after I was done breastfeeding was an estrogen cream to try and get the skin to thicken up, because it was so crazy thin by then. The estrogen cream made me unbelievably depressed, to where I was constantly crying all the time, for no reason, and my skin didn't change. Then he sent me to a gyno specialist out of UNC. She was AMAZING. It was the first time any dr really sat down and listened to everything I said. I cried so much and the appointment ended up being almost 2 hours, and she didn't care. So she was trying to treat my nerve pain and my skin. My skin had turned almost white for several years, but a few years before had changed unto this unbelievably dark angry almost red kind of pink. So she tested me for stds, and I was positive for the common herpes one - not the herpes with the sores and stuff. The kind that sort of goes through your whole body and your body clears it out of your system on its own after several years. She said it was probably unrelated but wanted me to take the antibiotic for that, in case my body fighting that was just too much of an overload and making the lichen more severe. So did that. Skin slowly went back to normal pink color afterwards. And she put me on clobetasol for the itching. And it sort of helped. But we couldn't back down to maintenance or the itching immediately came back. We went back and forth with the clobetasol for a few months, and anything less than twice a day just didn't help. So she switched me to halobetasol to see if I did better with that. And I did. The itching mostly left, and I managed to get down to twice a week as maintenance. But I'd still flare up and need to increase for a week every couple weeks. Then she had me see a dermatologist to try and fix the tearing. Both of them had biopsies me and they were negative. They said that that just meant the tissue they got missed the cells. Everything else was classic lichen, so they wanted to keep treating as lichen. And we finally found the right med for my vulvadynia. So now the nerves in my skin were masked, but my skin and inside my vagina still hurt. The dermatologist was extremely unhelpful. She basically told me I was tearing from having sex that was too rough, and to put Vaseline on several times a day to let my moisture barrier in my skin heal. The Vaseline burned like fire and several months of multiple times a day changed nothing. Very careful monotonous sex still left me as torn up as non-careful sex did. Then we moved states. Found new dermatologist in the current state, and she was wanting to try several things. That first visit with her was when I found out the inner labia were now 90% fused together with my outer labia. They put me on Doxycycline for the scar tissue, to try and keep any further fusing, or shrinking from happening. By now my skin looked Grey and crinkled up like tissue paper. They also had me start baby aspirin to try and increase blood circulation. And then the biopsy they did showed severe atrophy from the halobetasol and it was starting to spread to my stretch marks on my inner thighs, so I had to stop the halo. So we tried switching to tacrolimus. It burned so badly, and it never got better. They said it burnes at first as your body adjusts from the steroid use, but the burning never got better. And the tearing and thin skin never got better. So after a few more months we tried epiceram. Still burned a lot, no change to the tearing or the skin thickness. So then my new gyno out of Vanderbilt said she wanted to try hormones again, to get the skin thicker. So she tried a blend of 2 types of estrogen and 1 testosterone. We hoped doing a mix that had testosterone in it would keep the depression and crying spells under control while the estrogen worked on my skin. And it didn't. They happened anyway. So then my dermatologists boss saw me, had me go through everything and he tried to think outside the box because I'd pretty much tried everything in the box he knew of. Gyno said the same thing and wanted me to restart the halobetasol for the itching . The dermatologist suggested we try an immunosuppressent medication. He said essentially that should stop my skin from building new damaged skin cells because it would slow down how fast they were made. So we started with cyclosporin. And it worked. It was the first thing in over 2 years that did. The itching completely stopped after 3 weeks. At 6 weeks my skin started to get thicker again and not be crinkly or see through. The tearing dropped to about half as often/easily. But the side effects were unbearable. I got some other medication from my primary to treat as many of the side effects as we could. But I literally spent all day and night feeling super sick, no energy and everything hurting.
@@thelostlabiachronicles Part 2 And by then I was 3 years into trying so many different drugs for the skin and nerve stuff that my hair was falling out in clumps. I was starting to look like I was balding on the back of my head where my ponytail or bun usually goes. So we tested my hormones to make sure it wasn't genetic early hair loss and my hormones were fine. My primary was also doing a lot of blood tests for any kind sign I had any other autoimmune diseases. And my thyroid. Everything came back fine. So after 3 months of that, he said let's try a different immunosuppressent, since we know something about it is working, maybe you'll tolerate a different drug better. So then I did 3 months of mycophenolate mofetil. And it helped the tearing a tiny bit more than the cyclosporin, but the side effects were even harder to live with. My primary was still trying to help solve some other issues I'd had for years, and after everything autoimmune came back negative sent me to my allergist for an eosinophile blood test. He tested for those and my IGE levels. Both were high, but my eosinophile count was way high. I was already in a 5 year program of allergy shots and on 4 different prescription allergy meds for my allergy symptoms, and they were not fully under control still and I'd started getting full body hive breakouts after my shots. So he said it was time to try some biologics. Around the time I switched from the tacrolimus to the epiceram I'd also started seeing a pelvic floor physical therapist. She's been amazing. I had a lot of muscle tightness and spasms that were happening, and that was causing the pain inside during sex. So we worked on fixing that. I also had a lot of scar tissue adhesions from surgeries that were pulling on some of those muscles so she did some massage stuff to try and loosen those. And after 2 months of the massage stuff I started to physically feel the adhesions break loose and the sudden movement freedom I had afterwards. So I saw her for about 5.5 months and we agreed I'd gotten as better as I was going to get inside and we called a stop. But she had gone to a conference that was about dupixent being used off label for lichen, and a lot of lichen patients were seeing great results from it. So when my allergist brought up we need to start biologics now, I asked if he could prescribe dupixent first so we could see if I'd get the benefit for both issues. And he said that was fine, because dupixent covers both ige and eosinophiles. He said if I weren't trying to treat both conditions he would have started me on something else that only targeted eosinophiles because those were my main allergy issue, but he was happy to start wherever I wanted to. Then my dermatologist mentioned she had just gine to derm conference that also talked about dupixent off label use for lichen. She and i were both really excited my allergist was on board with trying that. So I came off the immunosuppressive drugs because of both the side effects and the negative effect it was having on my liver and BP. And did 3 months of just the dupixent. And the tearing came back after 2 months, just as bad as ever. My skin started to get thinner again and loose some of its color again. So I went back to my dermatologist and asked her could I try doing a half dose of one of the immunosuppressive ones, plus the dupixent and see what that did. And they both said that would be fine, there shouldn't be an issue mixing those. So I went back on the cyclosporin since those side effects were a little less than the mycophenolate. So I'm now holding steady with that combo. The half dose plus the dupixent is working as well as just the full dose of cyclosporin, but the side effects are maybe 25% of what they were at the full dose. And my skin is normal thickness again, mostly normal color which for me is a pale pink. The tearing is about a 55/60% improvement over where it goes without being on medication. It still tears every time we have sex, no matter how careful, or how well lubed, or what position, or anything else. Sex feels like taking a big final end of the year test, that it's not possible to get a great grade on. I use a vibrator the whole time to distract from the tearing feeling, or the muscle spasms I still sometimes get during. It works well at distracting my nerves. But my skin can't handle the vibrations with the material of the tool. It's too much friction so I have to wrap it in fabric to have less friction on my skin. I use baby wipes instead of toilet paper, because even toilet paper can be too much friction 30% of the time. I have to shave everything. If the hair grows in more than a few days, it's too abrasive for my skin, causes inflammation and turns into tears. I can tear still sometimes from twisting or getting up and down to fast and the skin sticks. It's not all the time. But I'm only at about a 60% overall improvement so 40% of the time I'm tearing from something incredibly mild and stupid. We really want to have a second child. I'm terrified of how badly I'd tear with a vaginal birth. I haven't found an obgyno with a lot of specific experience with lichen in my area yet. We're a couple years from wanting to actively try for a sibling, but it's on my mind constantly. And what kind of fusing or thinning could a second birth/estrogen drop cause? The first one was so dramatic. How bad will it get if I do it again? I think of myself as in a tolerable plateau right now. I'm not fully under control, but what else is there to try? The only idea anyone's brought up that I haven't tried is laser therapy. And that seems to either go really well or really badly. And it's not covered by insurance so that a huge financial commitment. The cyclosporin isn't a medication that's considered safe to be on long term. It's hard on the heart, liver and kidneys. The most common use for it is things like organ transplant, to keep the new organ from being rejected. I'm on a way lower dose than people using it for that, but it hasn't been studied much for long term use for this. And skin deformity is different than loosing an organ. The risk vs reward is very different. We'd hoped if my skin became normal, I could do a few more m9nths, then come off and my body would keep making healthy skin cells for a while, so the cyclosporin would be an intermittent use, with less frequent rather than more frequent. But that's not what happened when I stopped. We're not sure what to do now. My dermatologist is asking other people in his field to see if anyone else has other ideas. But currently this is where I'm stuck at. And I can't take it while pregnant or breastfeeding. So what do I do during that time? What kind of birth am I looking at? And what happens when I'm older and go through menopause? The fusing was triggered by a drop in my estrogen levels. And I can't use estrogen cream of any kind without depression and uncontrollable crying. So what on earth does my future look like? No one seems to have those answers.
thanks for this video! i do not have a diagnosis and i doubt i ever will but so much of what you've described is just like my own experience. the last 3 years have been aweful and i don't know what to do. but I'm going to watch all your vids and find this podcast.
You've putten all my feelings and emotions into words. Thank you! 😔 I was prescribed medication for Yeast Infection & UTI 3 days ago. medication honestly doesn't feel like it at least gave me some type of relief and all the symptoms are still there, having trouble sleeping every night as well. Mornings and throughout different times of the day felt the same. Definitely mentioning this to my doctor
Aw, thanks, Penina! I apreciate you watching and taking the time to comment - it means so much to me. Can I ask what your symptoms are? It's unfortunately quite common for LS to be chronically misdiagnosed as yeast or UTI's before finally getting a proper diagnosis. What's making it hard to sleep? And yes, definitely bring this to your doctor. A proper diagnosis is critical to managing and treating.
Alot of discharge that's somewhat transparent to milky white, severe itching and irritation on one side of my labia. The itchiness and the discomfort has been gradually increasing for the past month and a half and it feels like it my skin was starting to be more sensitive to the point where it would leave open cuts. I also had these white thick and rough patches. I've been wearing tampons and panty liners at the same time because everytime im moist down there that's when it really bothers. Right now im trying to see if i will recover or get any better with the prescription i was given. Will be taking them for the next 2 days
@@peninalevao7492 Ugh, you poor thing. That sounds absolutely miserable. LS doesn't have discharge. It's possible you have LS + a vaginal yeast infection, or a vaginal yeast infection + something else. Were the white patches there before this infection. Definitely document how you respond this medication, and any additional symptoms you have been having before the discharge. The more data/information you can give your provider, the better. I hope this resolves for you quickly and that you can get some answers. Keep me posted.
@@thelostlabiachronicles The white patches started appearing after the first week the symptoms worsened. They were actually the most uncomfortable then because it was sensitive to the touch, pinkish and moist at that time. I wish Id seen the doctor sooner but i honestly thought its just another yeast infection and abnormal discharge i typically get after having sex. I've had the same partner for the past 2 years and my yeast infections were never this bad. I really appreciate you for reaching out to me. im feeling a bit better knowing im not alone on this and will definitely keep you updated 💯
I have been bed ridden from it and I scream in a bathtub of cold water to pee. Obviously I don't dare drink or eat much. I've contemplated ending it all day. If there's an answer, I sure need one... Bless to anyone dealing with this.
Hello 👋🏽 I’m sorry that you’ve been having such a rough time. Have you tried using a barrier cream like Vaseline? I burn a lot because of the friction walking causes me and I’ve found Vaseline has helped me with this. Jaclyn has a very helpful and informative video on using barrier creams on the other channel Lichen Sclerosis Support Network. I hope you find relief quickly!!!
iI never had pain with sex but one night I was reading in bed and felt a horrible itching start up inside the vulva. I turned up the light, grabbed a hand mirror and took a look. I saw a strange white pearl-like patch there. Next day I called my GYN and got in for an appointment and she thought the area shoulberemoved. She numbed and cut ut out and it turned out to be VIN (I forget what stage). I was still itching after I healed, so I went back and she thought from some small blood blisters she saw and the fact that I was post-menopausal that it was LS, although she took a biopsy that came back negative. I figured it was an irritation from shower gel or clothes detergent and tried everything natural to no avail. I joined a Yahoo group for LS and got more information. I still itch, Clobestasol helped the most but I was also on Synalar. My wonderful GYN is gone now (Covid) and I am still just unconvinced that I really have LS. (I did have white guitar-shaped skin down there though.) Great video and wishing you continued remission.
To EVERYONE HERE! MY NARURALPATH has been an ABSOLUTE SENT FROM HEAVEN. He tested me for what nay cause flare ups, put me on the foot baths and hooked me up with electro therapy. STOPPED ITCHING. OK? OMG. I CAN SLEEP NOW.
I think EVERYONE should go see alternative dr to get to the ROOT CAUSE OF WHY the immune system has gone off the rails. Also he has me soak tampon in regulat pro and water 1:2 ratio then insert for 2 hours. This has ELIMONATED ANT BITING SENSATION NO longer need topicals. Obviously I went at my own risk; you go at your own risk.
@@Smokillo some people will tell you these are BS . Good for them. Ummm the foot bath removes toxins. The water turns to looking like -sorry this is gross- diarrhea. I had always been a skeptic until I noticed I could have a cocktail without the usual headache!
Im not diagnosed but it looks like what I’m experiencing for a year except I don’t have much pain but very very very bad itching. It’s horrible everyday it itches me… I’m seeing my dermatologist soon I’ll mention this disease to her
i only have pain during sex it burns me a lot and when I’m peeing and doing the other one it hurts a lot I did a lot of test no yeast infection or bacterial infection and no sexually diseases
I’ve been crying so much recently I was depressed for 4 years and I just ignored all of my symptoms and in January and I also couldn’t remember what my vulva looked like and I have been checking my vulva so much and I’m so scared it going to disappear!! I am already fusing and my clitoral hood has almost fully covered my clitoris. I’m just a mess. Especially because I’m 32 and I know the disease gets worse with age so it’s just so much!!!
Hi, Rachel. Your feelings are totally valid; I and many others have felt similar things. Can I ask how you are treating. Research as show that proper and consistent treatment helps keep inflammation at bay, slow the progression of the disease, and reduce the likelihood of developing vulvar cancer. I can say that once I started to treat, my vulva stopped fusing/resorbing, my color returned, and I am not two plus years in remission.
@@thelostlabiachronicles that is awesome!! I’ve been on betamethasone valtrate for a couple months and I just got prescribed estradiol a couple weeks ago so now I’m using both. The cuts and burning has gotten so much better but since starting the estrace I’ve had a lot of spotting so I’m not sure if it’s from that but I’m hoping they both stop fusing!! Thank you for posting your story it helps out so much because I couldn’t find too many experiences just doctors talking about it.
@@rachelgonzalez2488 Hmm, so I'm not sure about the spotting and estrace - I'd recommend bringing that to your doctors attention just to be extra safe. But you are doing all of the right things. It can definitely take time for things to settle. According to the literature, it takes folks with vulvar LS approximately 3-6 months to get into remission. I have a blog post on progress and LS that you can check out at www.lostlabia.com/progress if you want to learn more. You got this! I'm here for you if you need.
Hi I can relate so much to you because I have the same issue and only just today I have found out I have this.. i feel so sad and just crying... I just want this to stop.. it's the worst most uncomfortable thing in this world! I also feel burning higher up like feels like my ovaries are burning 😭 I just want this burning to end.. did the steroid ointment just help you totally or did anything else.. my gynecologist prescribed me the same ointment.. also get same difficulty and pain and bleeding after intercouse... I pray this burning just ends 😢😢😢
Aw, so sorry to hear you are recently diagnosed. It's SO scary and hard in the beginning. If you ever want to chat, I do offer calls which you can learn more about here - www.lostlabia.com/supportcall. I also have a free eBook if you prefer learning through reading at www.lostlabia.com/lsebook - I mostly used steroids, but I also worked with dilators, pelvic floor PT, stimulating my vagus nerve, and working with a sex therapist. Check out my video called how I stay in remission for more details or we can always chat more in dept on a call. Just to give you some hope, as bad as I was, I eventually got into remission (it'll be 3 years of remission in May) and now have pleasurable, pain free sex. With so much love,
@@thelostlabiachronicles I will definitely look into this.. I also get alot of burning higher up, did u experience this ? .. like it feels like my ovaries ( where they located) or the part we get period pain.. it literally feels like it's burning so I don't know if this is linked to LS ... I went to the doctor he said u can't say your ovaries are burning there's alot of stuff down there 🥴 .. so I have got a scan coming up.. I've had many before aswell. Also when I went into labour I got a bad tearing in my vagina aswel... So it's all very mentally draining ... 😢😭
I am sorry everyone is going through this. My doctor thinks I have LS but wants to do a biopsy to confirm. Has anyone had a biopsy, I am really scared.
@@jazzycat312the good news is not cancer but it did confirm lichen sclerosis. I'm on my 3rd prescription. It has gotten somewhat better but the itching is still bad. Trying Palestinian Olive soap for cleaning the area. Just diagnosed in March 2024.
@halstead58able good to hear there's no cancer. How long have you had symptoms before being diagnosed? I've had symptoms for at least 10years and feel scared that it could be cancerous after all this time. It was just itching that would come and go...and now I'm having the white patches of skin. I'm scheduled next week for gynecologist exam.
@@jazzycat312 hard to say. Sex was becoming painful and was going into menopause so assumed it was that 8 years ago. Stop being active. The last 1.5 years the itching, and lesions, then most recently the skin irritation. I tried everything and then went to my doctor.
Hi, B N. Thanks for watching and taking the time to comment. The ointment is applied to the vulva, which is the external genitalia, not the vagina, which is the inside genitalia. If you want specific guidance on exactly where, this would be a question for your provider. Ask them to show you exactly where on your vulva they want you using the ointment. With love, Jaclyn
There are a ton of different steroid ointments they can trial as well as calcineurin inhibitors (non-steroidal ointments). It can take time for the medication to really calm things - it tasks approx. 3-6 months to get a patient into remission when using steroids properly, and for some it can take more time. There are things you can do to manage your symptoms in the meantime; what symptoms are you struggling with.
@@thelostlabiachronicles Thank yiu Labia for the response. But gynecology doctor says to see dermatalogist and dermatologist says to see gynocologist. Sometimes they say physician too...This is very confusing on whom to approach and ask for right evaluation
@@pallavipallavi6826 Both specialities should be equipped to deal with LS. It sounds like neither understand what it is. Try researching a derm or gyn that knows that LS is. You can check out this LS provider directory: www.lssupport.net/searchable-lichen-sclerosus-provider-database/ hopefully you can find a derm or gyn on the list near you. Please read through the disclaimer at the top of the page.
I'm sorry in advance, this is going to be long. I feel your frustration. I was born with a very rare hereditary skin disorder called Epidermolytic Hyperkeratosis (EHK) also called Epidermolytic Ichthyosis (EI). It has thickened hyperkeratinized skin and is from head to toe. If you look it up you can see pictures on Google. Anyway I keep mine looking pretty good. Some who don't care for theirs as well or maybe don't know how, can get really bad. It tears , we get blisters, can't perspire, and our skin reproduces 300 times faster than yours does. I know it sounds like an exaggeration but it's not. The ONLY positive thing and EHK is how extremely quickly we heal and that we don't wrinkle easy or scar easily at all. I had a second degree burn from accidentally spilling a pot of boiling water on myself and the whole right side of my chest and abdomen got the worst of it. No scars or permanent damage. Unfortunately since most doctors including Derms don't know anything about EHK they don't know how to treat it, and Diagnosing any other skin issues can even be challenging because nothing ever appears as it should or textbook on me. The EHK affects me from head to toe but doesn't affect mucus membranes so the oral cavity, throat, vagina, inside the lips of the vulva and barely on the outside of the vulva. Ten months ago Nov 2023, I got a "spot" on my thigh and it was just that one spot for six months then in May 2024 my doctor put me on an oral steroid for lower back problems. A week after getting off of them I had another couple of spots appear. Very flat and smooth to the touch, bright red, and extremely itchy. I finally went to a Derm which I honestly hate doing because I have to educate them on the EHK nine times out of the, but I went in to find out what these spots are. So he does a skin scraping on one, a small one to test for ringworms. I knew it wasn't that because no one had caught it in that six months even with direct skin to skin contact. It came back positive and he put me on an antifungal cream. I used it to humor him. By day three of using that I popped up with like 11 more of these spots all up my thigh, groin and lower abdomen. I stopped using it. It wasn't helping. After doing some research I discovered that dead skin cells can cause a false negative for ringworms. Since my skin reproduces so fast I have layers and layers of dead skin cells, so I went to a different doc in the same clinic and she done another skin scraping only this time she done it on multiple lesions and as I suspected it came back negative. No ringworms. It was a false positive. So then she done a biopsy to check for nummular eczema but only the EHK showed up. Also this doesn't appear as eczema. No bumps open sores. I think she got in over her head with the EHK and instead of just saying so, she completely avoided me from that point on I called four times in a two week period to see if she can do another biopsy from the center of a lesion instead of on the edge and what our next steps were going to be, and she never returned my call. Fast forward, it's now 10 months from the first one appearing. I went to a gyno and although my bottom (anus and all inside my but cheeks) and my vulva are white with what looks like a film that won't come off, several lesions, and me telling her about my vulva tearing, severe itching especially on my bottom in between my cheeks and anus, sometimes just uncomfortable, fissures, and that at one point, just like on my skin that the texture of my skin down there got really weird during this huge outbreak of these lesions. She told me that because I don't have any fusion or the typical white areas (that she's used to seeing. Remember I said nothing appears as expected on my skin) that she doesn't think it's lichens and it must be my skin problem so I need to go to a dermatologist. For years I've had to Dx my own ailments and advocate for myself only to later have them confirmed because doctors won't take the time to educate themselves. It's frustrating. I have yet to officially be DX with Lichens or morphea which I suspect possibly both. I have these spots all over my body except my face and hands. So I'm learning as much as I can about it in hopes of finally finding a Derm who can give me a DX. Those once red and inflamed spots are now hypo pigmented and are either white or light pink. I put off a lot of busy heat due to the EHK and inability to perspire so I'm shocked that any are actually white as my skin is always red. Anyway, your videos have been a wonderful blessing so thank you for putting yourself out there to help others of us dealing with this.
I was just diagnosed today…. Prescribed a cream and was told I “could” get vulvar cancer…. I feel absolutely horrible. I’m already high risk for cancer with other conditions I have. I’m thankful I came across your channel… but I still can’t stop crying.
There is platelet rich plasma (PRP) therapy and stem cell therapy. Both therapies are NOT covered by insurance however both therapies are effective. The stem cell therapy is more long term. PRP therapy is done in lots of clinics because people do it for vaginal rejuvenation. However stem therapy is not done in many places. Dr. Nathan Newman does the stem cell procedure in LA California. You can goggle search him. Lots of women went into remission. Hope this helps!
Feel free to come to our FREE virtual support meetups at www.lssupportnetwork.org/connect or for more personal, 1:1 peer support, I do offer calls which you can learn more about and book at www.lostlabia.com/supportcall Feeling anxious, angry, scared, etc., is so so normal, and we all go through it. I see and hear you, but there is support and hope out there. It's important to follow a treatment plan that is evidence-based like topical corticosteroids. When you use your steroids consistently and optimally, they reduce the likelihood of cancer development and bring that risk back down to baseline population risk. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's UA-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
I understand how you feel. I am EXACTLY in the same position.
Very upsetting, especially when you can't share.
Your story is a mirror image of mine!! 62 Just got diagnosed today
I'm 62 and was just diagnosed. I've had it at least 10 years, but vague and minor symptoms.
So helpful. Thank you for sharing all of your learning. Recently diagnosed and you have provided so many valuable insights. Will keep following and absolutely will connect with the various resources you have shared
Wow - your story sounds so familiar! I just recently found a name for it but suffered from it most of my adult life! I remember in my 20s and reading article in health magazine about vulvodynia! Finally, found a name for it during my menopause! We should all get together and firm a group and share our stories online so it could help others💕love and hugs to anybody who is going thru this 🤗
Yes! I'm glad some of my story resonated with you. It's so wild how many of us can go half a lifetime with no name or answer for our pain. I hope you are managing it well, now. We actually do have a virtual LS support group you can join at www.lssupport.net/connect We do this every other Saturday from 2-4 or 7-9pm Eastern Time and it's co-hosted by myself and Kathy of Lichen Sclerosus Podcast. It's totally free, so feel free to join. And thank you for watching, commenting and supporting my content - I appreciate you!
I diagnosed myself with a 5 minute internet search. 4 reasons for labial itching, yeast, bacteria, cancer, LS. Whitened skin. Hard to miss!
Exactly the same story here. My pcp made me wait 3 weeks for a gyn specialist to diagnose and prescribe, because she was 'unsure', saying it may just be vitilago. She gave me nothing for relief.
I just went to the gyn ... and bingo. Yep. Me and the "Clob" are best friends. Those 3 weeks were hell.
So much resonance with your story Jaclyn. Especially being told nothing is wrong followed by the mix of emotions ranging from relief, validating to terrifying on diagnosis. Thank you, it helps so much to know I’m not alone.
You are definitely not alone. I'm glad you've found a safe community to share your journey with. Thank you for watching
Omg this is sooo like my story. Exactly the same, undiagnosed for many many years. Back and fro to doctors, took myself to std clinic. Doctors assuming it's psychological re sex or you are a hypochondriac. Eventually biopsy and diagnosed. I have constant flareups, affects sleep etc. Am mid bad flareup just now and so uncomfortable or downright painful on my nightshifts or when trying to sleep through the day. Hearing your story is almost comforting, just to hear someone else has had the same issues and completely understands how much it can impact on your life in many ways especially with partners etc. Thankyou for sharing so openly. ❤
Hi, Ann. Thank you so much for watching and taking the time to comment. It means the world to me. Ugh, yes yes yes. I also was treated like a hypochrondriac and it felt awful. My new content will be on LSSN's page, so be sure to subscribe over there and watch my new videos - I have some great videos planned for 2023. You can sub at www.youtube.com/@lichensclerosussupportnetwork and, if you are feeling alone, you can consider joining our FREE LS virtual support meetups at www.lssupport.net/connect or sign up for a 1:1 with me if that's more your thing. Either way, you are definitely not alone and it's nice to hear my story resonated with you. With love, Jaclyn
Thanks for sharing your story, it's so brave to talk openly about such intimate issues. And it helps! I got diagnosed recently and I realise how lucky I got walking into an appointment where the doctor recognised it straight away. I believe it's so important to get out as much info as possible. Nobody should get dismissed year after year with legitimate concerns, we all deserve help!
Hey, Julia! Yay! This is amazing. I love hearing stories of knowledgeable doctors who were able to diagnose right away!
I've read online that this condition is fairly rare, but my amazing gyn Dr. said she sees cases on a semi frequent basis. It was not a mystery or surprise to her at all. A lot of cases go undiagnosed.
@@jazzycat312 I do wonder how many of the "yeast infection" cases I and the women I know have been constantly diagnosed with are actually LS. It's unfortunately still rarely discussed, as it was with endometriosis. Now at least there is a recognition and a proper diagnosis for endo patients not just "pain levels differ, it's just how you experience it".
@@juliasm3443 totally agree!
I am so happy I came across your channel.
I have had LS for years undiagnosed until 2014 when it was diagnosed via biopsy.
I have had symptoms for over 10 years before that.
As a result it has caused Vagimismus making any exam impossible.
I use Dermovate twice a week and Hydramol daily.
But so fed up of being fobbed off.
The tearing is terrible with itching on slightest touch. 😢
Thank you so much as I am changing doctors in 2 weeks and gonna see if the new doctor is better as need to be re referred back to a gynaecologist to set up another plan as my current plan is not working that well.
Thank you again. 😊❤
I totally hear you on this. I developed vaginismus as well. I'm glad you are going to get a second opinion because it's not OK for you to suffer like that so long. Not everyone responds well and fast to steroids; some folks need creative doctors who are compassionate, knowledgeable, and willing to try different things in order to get relief. I hope your doctors appointment goes well. Good luck; you got this
Thanks so much for your video! My daughter has these symtoms!! Her doc know but only just ordered some tests for her to have done. No calls regarding the results yet. Thank you for brave information you share with us!!
Thank you for sharing your story! I’m glad you’re Canadian too (Vancouverite here). It took me over 30 years to get a diagnosis! Sex was painful right from the start and for three years straight I thought I had a yeast infection and was prone to them constantly since. Finally last year a proper diagnosis! I have other autoimmune diseases so I’m surprised and choked no one figured it out sooner. Thank goodness I took things into my own hands and asked for a referral to the specialty clinic here. Thank you again and I hope you stay well. ❤️
Oh, hello West coast neighboor! I love Vancouver - so pretty! Which clinic to do you go there? OMG, 30 years is WAY too long. I'm so sorry you had to suffer all those years alone. I totally feel you with thinking you were just super prone to yeast infections - I remember a couple of years in my teens where I just constantly had one (or, I/doctors just assumed it was yeast and kept treating for yeast even though nothing helped). Good on you for advocating for yourself and getting into a specialty clinic. Thank you so much for watching and taking the time to comment. I so appreciate it :)
I’m at the Vulvar Clinic at VGH. I see Dr. Altas there. Thank you for your kind comments. Stay well. ❤️
Does anyone else feel embarassed when friends
ask " whats wrong"?
Theres like NO WAY Im answering that question! Isolation on top of misery. Boo-Hoo.😂
Thanks for sharing and being so brave! 🙏 This video (and your others) will help so many!!❤️❤️
Thanks, doll! I appreciate you
Jackie, first of all, a huge hug for both you and *****. (I don't want to give your private info out to the world!) You have been so strong along your journey and I have learned so much about this disease, and how you have coped to reach this point. It is amazing to see how people move forward against very difficult odds. I have also learned a lot from your frank discussion. Thank you and I wish you the very best future in all ways.
Aw, thank you so much for taking the time to comment. I appreciate your kind words so much, and I'm glad you've learned a bit about LS on the way. I'm a strong believer in the importance of awareness, which unfolds at every level. The more people that know, the more research we have, the more people get diagnosed earlier, etc.
@@thelostlabiachronicles Jackie THANK YOU. This information just after my diagnosis is both a relief and emotionally devastating. I’ll look into the rest of the pods. This is my 3rd autoimmune disease.
@@amymacleod3494 Oh, I'm so sorry to hear this is your third AI disease. Unfortunately, AI diseases often run in packs. Which others do you have, if you don't mind my asking. Relief and emotionally devasting is an extremely valid way to feel. I felt a similar way too - yes! validation! a diagnosis and then a deep plummet in fear, worry, etc. Feel free to email me at jaclyn@lostlabia.com if you ever need some extra support or want to share your story.
Who ever thought lichens can be cured am permanently free from it now with the special herbs medications which Dr iyaremoses on UA-cam prepared for me
I've just been diagnosed and I really relate to your story so much! It's nice to not feel alone in this. Earlier in my symptoms I had one doctor tell me to take an anti-inflamatory pill and wear a skirt....
Lol... and I'm betting it didn't help!
I was just diagnosed last week, after years of confusing flare ups. I thought it was the itch that can accompany pre-menopause, since I knew I didn't have an infection or anything. Years of needless itching and misery for nothing.
THE ITCHING IS WORSE THAN 100 MOSQUITO BITES.
AND...
THE LOCATION MAKES IT NOT COOL TO SCRATCH IN FRONT OF OTHERS.
OH, WOWIE!
I relate so much 🤍🤍🤍 thank you for sharing!
Thank you for this. I've had this for around 14 years. It took me 12 to get diagnosed, and it only happened because I was seeing a specialist for my vulvadynia (that I had had for 14 years, also undiagnosed before then) and the specialist realized my inner labia were shrinking. And she asked me questions about my skin and labia, and did a punch biopsy that day.
Your story and timeline is almost exactly like mine has. I've been trying for 2.5 years to find out more information, on both conditions. And neither seems to have a lot of useful info. And I've changed Dr's, and changed states, and changed Dr's again, and I'm stuck. My dermatologist and I found a med combo that's improving my skin, but only to a point. I still tear, EVERY time with sex. With exercise and shaving and twisting occasionally. The itch is gone on this treatment, but my dermatologist is stuck with what to do next. My current and only working med isn't safe for life long use, and lichen is a life long condition.
I've tried so hard to find other individuals with this, to hear their stories and journeys, to try to find ideas, to feel less alone, anything. But so few people are talking about this from a personal journey pov. Thank you for being one of them.
Hi, Thayer, thank you so much for sharing your story. I'm so sorry that you had to go through something similar as well. It can feel incredibly frustrating, confusing, scaring, and isolating. Sorry to hear about the recurrent tearing; can I ask how you've been treating?
@@thelostlabiachronicles
Yes! I'm happy to! I'll list it here, then do another comment with the explanations and progressions. Maybe you'll see or remember something from someone else I haven't tried.
Estrogen cream
An antibiotic for herpes simplex
Clobetasol
Vaseline
Halobetasol
A blend of 2 types of estrogen plus testosterone
Baby aspirin and Doxycycline
Tacrolimus
Epiceram
Cyclosporin
Mycophenolate
Dupixent
Back to cyclosporin plus the dupixent
I also found an otc lotion that helped soothe my tears and skin barrier more than anything else had. I only put a tiny bit on once every week or 2. It burns for a few minutes then everything feels fine and a little more stable for a few days. That's called ceramedx
@@thelostlabiachronicles
Part 1
I've tried a lot of different things over the last 3 years. And I used to think nothing was working because I wasn't getting Dr's who knew enough. But when I started visiting online support groups I realized most people were getting waaay less help than I was. And that was terrifying because, if I've tried more things than most people and still not getting any major long term wins, then the progress I'm at....maybe this is the best it gets then.
And I'd had the condition for about 10 years undiagnosed, with just itching and tearing and painful sex (which, found out 14 years in I ALSO have vulvadynia so a lot of sex pain was from those nerves also). But after I got pregnant and had my son, my labia suddenly started to fuse in fast forward. The working theory is when I tried to breastfeed the sudden dip in my estrogen triggered the lichen to take that next step that hadn't been happening before. So my labia got see through level thin, then they were tearing CONSTANTLY, and doing the sticking thing, and I went from normal looking labia to completely fused inner-to-outer labia in less than a year. And I didn't even know it was happening until it was mostly already fused. I'd had no idea that could even happen. And so I didn't get diagnosed or start any kind of treatment until the fusing had already started.
The first thing my ob tried after I was done breastfeeding was an estrogen cream to try and get the skin to thicken up, because it was so crazy thin by then. The estrogen cream made me unbelievably depressed, to where I was constantly crying all the time, for no reason, and my skin didn't change.
Then he sent me to a gyno specialist out of UNC. She was AMAZING. It was the first time any dr really sat down and listened to everything I said. I cried so much and the appointment ended up being almost 2 hours, and she didn't care.
So she was trying to treat my nerve pain and my skin. My skin had turned almost white for several years, but a few years before had changed unto this unbelievably dark angry almost red kind of pink. So she tested me for stds, and I was positive for the common herpes one - not the herpes with the sores and stuff. The kind that sort of goes through your whole body and your body clears it out of your system on its own after several years. She said it was probably unrelated but wanted me to take the antibiotic for that, in case my body fighting that was just too much of an overload and making the lichen more severe. So did that. Skin slowly went back to normal pink color afterwards.
And she put me on clobetasol for the itching. And it sort of helped. But we couldn't back down to maintenance or the itching immediately came back. We went back and forth with the clobetasol for a few months, and anything less than twice a day just didn't help.
So she switched me to halobetasol to see if I did better with that. And I did. The itching mostly left, and I managed to get down to twice a week as maintenance. But I'd still flare up and need to increase for a week every couple weeks.
Then she had me see a dermatologist to try and fix the tearing. Both of them had biopsies me and they were negative. They said that that just meant the tissue they got missed the cells. Everything else was classic lichen, so they wanted to keep treating as lichen. And we finally found the right med for my vulvadynia. So now the nerves in my skin were masked, but my skin and inside my vagina still hurt.
The dermatologist was extremely unhelpful. She basically told me I was tearing from having sex that was too rough, and to put Vaseline on several times a day to let my moisture barrier in my skin heal. The Vaseline burned like fire and several months of multiple times a day changed nothing. Very careful monotonous sex still left me as torn up as non-careful sex did. Then we moved states.
Found new dermatologist in the current state, and she was wanting to try several things. That first visit with her was when I found out the inner labia were now 90% fused together with my outer labia. They put me on Doxycycline for the scar tissue, to try and keep any further fusing, or shrinking from happening. By now my skin looked Grey and crinkled up like tissue paper. They also had me start baby aspirin to try and increase blood circulation. And then the biopsy they did showed severe atrophy from the halobetasol and it was starting to spread to my stretch marks on my inner thighs, so I had to stop the halo.
So we tried switching to tacrolimus. It burned so badly, and it never got better. They said it burnes at first as your body adjusts from the steroid use, but the burning never got better. And the tearing and thin skin never got better.
So after a few more months we tried epiceram. Still burned a lot, no change to the tearing or the skin thickness.
So then my new gyno out of Vanderbilt said she wanted to try hormones again, to get the skin thicker. So she tried a blend of 2 types of estrogen and 1 testosterone. We hoped doing a mix that had testosterone in it would keep the depression and crying spells under control while the estrogen worked on my skin. And it didn't. They happened anyway.
So then my dermatologists boss saw me, had me go through everything and he tried to think outside the box because I'd pretty much tried everything in the box he knew of. Gyno said the same thing and wanted me to restart the halobetasol for the itching . The dermatologist suggested we try an immunosuppressent medication. He said essentially that should stop my skin from building new damaged skin cells because it would slow down how fast they were made. So we started with cyclosporin. And it worked. It was the first thing in over 2 years that did. The itching completely stopped after 3 weeks. At 6 weeks my skin started to get thicker again and not be crinkly or see through. The tearing dropped to about half as often/easily. But the side effects were unbearable. I got some other medication from my primary to treat as many of the side effects as we could. But I literally spent all day and night feeling super sick, no energy and everything hurting.
@@thelostlabiachronicles
Part 2
And by then I was 3 years into trying so many different drugs for the skin and nerve stuff that my hair was falling out in clumps. I was starting to look like I was balding on the back of my head where my ponytail or bun usually goes. So we tested my hormones to make sure it wasn't genetic early hair loss and my hormones were fine. My primary was also doing a lot of blood tests for any kind sign I had any other autoimmune diseases. And my thyroid. Everything came back fine.
So after 3 months of that, he said let's try a different immunosuppressent, since we know something about it is working, maybe you'll tolerate a different drug better. So then I did 3 months of mycophenolate mofetil. And it helped the tearing a tiny bit more than the cyclosporin, but the side effects were even harder to live with.
My primary was still trying to help solve some other issues I'd had for years, and after everything autoimmune came back negative sent me to my allergist for an eosinophile blood test. He tested for those and my IGE levels. Both were high, but my eosinophile count was way high. I was already in a 5 year program of allergy shots and on 4 different prescription allergy meds for my allergy symptoms, and they were not fully under control still and I'd started getting full body hive breakouts after my shots. So he said it was time to try some biologics.
Around the time I switched from the tacrolimus to the epiceram I'd also started seeing a pelvic floor physical therapist. She's been amazing. I had a lot of muscle tightness and spasms that were happening, and that was causing the pain inside during sex. So we worked on fixing that. I also had a lot of scar tissue adhesions from surgeries that were pulling on some of those muscles so she did some massage stuff to try and loosen those. And after 2 months of the massage stuff I started to physically feel the adhesions break loose and the sudden movement freedom I had afterwards. So I saw her for about 5.5 months and we agreed I'd gotten as better as I was going to get inside and we called a stop. But she had gone to a conference that was about dupixent being used off label for lichen, and a lot of lichen patients were seeing great results from it.
So when my allergist brought up we need to start biologics now, I asked if he could prescribe dupixent first so we could see if I'd get the benefit for both issues. And he said that was fine, because dupixent covers both ige and eosinophiles. He said if I weren't trying to treat both conditions he would have started me on something else that only targeted eosinophiles because those were my main allergy issue, but he was happy to start wherever I wanted to.
Then my dermatologist mentioned she had just gine to derm conference that also talked about dupixent off label use for lichen. She and i were both really excited my allergist was on board with trying that.
So I came off the immunosuppressive drugs because of both the side effects and the negative effect it was having on my liver and BP. And did 3 months of just the dupixent. And the tearing came back after 2 months, just as bad as ever. My skin started to get thinner again and loose some of its color again.
So I went back to my dermatologist and asked her could I try doing a half dose of one of the immunosuppressive ones, plus the dupixent and see what that did. And they both said that would be fine, there shouldn't be an issue mixing those. So I went back on the cyclosporin since those side effects were a little less than the mycophenolate.
So I'm now holding steady with that combo. The half dose plus the dupixent is working as well as just the full dose of cyclosporin, but the side effects are maybe 25% of what they were at the full dose. And my skin is normal thickness again, mostly normal color which for me is a pale pink. The tearing is about a 55/60% improvement over where it goes without being on medication.
It still tears every time we have sex, no matter how careful, or how well lubed, or what position, or anything else. Sex feels like taking a big final end of the year test, that it's not possible to get a great grade on. I use a vibrator the whole time to distract from the tearing feeling, or the muscle spasms I still sometimes get during. It works well at distracting my nerves. But my skin can't handle the vibrations with the material of the tool. It's too much friction so I have to wrap it in fabric to have less friction on my skin. I use baby wipes instead of toilet paper, because even toilet paper can be too much friction 30% of the time. I have to shave everything. If the hair grows in more than a few days, it's too abrasive for my skin, causes inflammation and turns into tears. I can tear still sometimes from twisting or getting up and down to fast and the skin sticks. It's not all the time. But I'm only at about a 60% overall improvement so 40% of the time I'm tearing from something incredibly mild and stupid.
We really want to have a second child. I'm terrified of how badly I'd tear with a vaginal birth. I haven't found an obgyno with a lot of specific experience with lichen in my area yet. We're a couple years from wanting to actively try for a sibling, but it's on my mind constantly. And what kind of fusing or thinning could a second birth/estrogen drop cause? The first one was so dramatic. How bad will it get if I do it again?
I think of myself as in a tolerable plateau right now. I'm not fully under control, but what else is there to try? The only idea anyone's brought up that I haven't tried is laser therapy. And that seems to either go really well or really badly. And it's not covered by insurance so that a huge financial commitment.
The cyclosporin isn't a medication that's considered safe to be on long term. It's hard on the heart, liver and kidneys. The most common use for it is things like organ transplant, to keep the new organ from being rejected. I'm on a way lower dose than people using it for that, but it hasn't been studied much for long term use for this. And skin deformity is different than loosing an organ. The risk vs reward is very different.
We'd hoped if my skin became normal, I could do a few more m9nths, then come off and my body would keep making healthy skin cells for a while, so the cyclosporin would be an intermittent use, with less frequent rather than more frequent. But that's not what happened when I stopped.
We're not sure what to do now. My dermatologist is asking other people in his field to see if anyone else has other ideas. But currently this is where I'm stuck at. And I can't take it while pregnant or breastfeeding. So what do I do during that time? What kind of birth am I looking at? And what happens when I'm older and go through menopause? The fusing was triggered by a drop in my estrogen levels. And I can't use estrogen cream of any kind without depression and uncontrollable crying. So what on earth does my future look like? No one seems to have those answers.
thanks for this video! i do not have a diagnosis and i doubt i ever will but so much of what you've described is just like my own experience. the last 3 years have been aweful and i don't know what to do. but I'm going to watch all your vids and find this podcast.
Awww, I'm so sorry to hear this. Can I ask what your symptoms are? The Podcast is Lichen Sclerosus Podcast hosted by Kathy, who is incredible!
You've putten all my feelings and emotions into words. Thank you! 😔 I was prescribed medication for Yeast Infection & UTI 3 days ago. medication honestly doesn't feel like it at least gave me some type of relief and all the symptoms are still there, having trouble sleeping every night as well. Mornings and throughout different times of the day felt the same. Definitely mentioning this to my doctor
Aw, thanks, Penina! I apreciate you watching and taking the time to comment - it means so much to me. Can I ask what your symptoms are? It's unfortunately quite common for LS to be chronically misdiagnosed as yeast or UTI's before finally getting a proper diagnosis. What's making it hard to sleep? And yes, definitely bring this to your doctor. A proper diagnosis is critical to managing and treating.
Alot of discharge that's somewhat transparent to milky white, severe itching and irritation on one side of my labia. The itchiness and the discomfort has been gradually increasing for the past month and a half and it feels like it my skin was starting to be more sensitive to the point where it would leave open cuts. I also had these white thick and rough patches. I've been wearing tampons and panty liners at the same time because everytime im moist down there that's when it really bothers. Right now im trying to see if i will recover or get any better with the prescription i was given. Will be taking them for the next 2 days
@@peninalevao7492 Ugh, you poor thing. That sounds absolutely miserable. LS doesn't have discharge. It's possible you have LS + a vaginal yeast infection, or a vaginal yeast infection + something else. Were the white patches there before this infection. Definitely document how you respond this medication, and any additional symptoms you have been having before the discharge. The more data/information you can give your provider, the better. I hope this resolves for you quickly and that you can get some answers. Keep me posted.
@@thelostlabiachronicles The white patches started appearing after the first week the symptoms worsened. They were actually the most uncomfortable then because it was sensitive to the touch, pinkish and moist at that time. I wish Id seen the doctor sooner but i honestly thought its just another yeast infection and abnormal discharge i typically get after having sex. I've had the same partner for the past 2 years and my yeast infections were never this bad. I really appreciate you for reaching out to me. im feeling a bit better knowing im not alone on this and will definitely keep you updated 💯
Have them do a biopsy or go see a dermatologist
I have been bed ridden from it and I scream in a bathtub of cold water to pee. Obviously I don't dare drink or eat much. I've contemplated ending it all day. If there's an answer, I sure need one... Bless to anyone dealing with this.
Hello 👋🏽 I’m sorry that you’ve been having such a rough time. Have you tried using a barrier cream like Vaseline? I burn a lot because of the friction walking causes me and I’ve found Vaseline has helped me with this. Jaclyn has a very helpful and informative video on using barrier creams on the other channel Lichen Sclerosis Support Network. I hope you find relief quickly!!!
iI never had pain with sex but one night I was reading in bed and felt a horrible itching start up inside the vulva. I turned up the light, grabbed a hand mirror and took a look. I saw a strange white pearl-like patch there. Next day I called my GYN and got in for an appointment and she thought the area shoulberemoved. She numbed and cut ut out and it turned out to be VIN (I forget what stage). I was still itching after I healed, so I went back and she thought from some small blood blisters she saw and the fact that I was post-menopausal that it was LS, although she took a biopsy that came back negative. I figured it was an irritation from shower gel or clothes detergent and tried everything natural to no avail. I joined a Yahoo group for LS and got more information. I still itch, Clobestasol helped the most but I was also on Synalar. My wonderful GYN is gone now (Covid) and I am still just unconvinced that I really have LS. (I did have white guitar-shaped skin down there though.) Great video and wishing you continued remission.
Thank you so much for sharing !
To EVERYONE HERE! MY NARURALPATH has been an ABSOLUTE SENT FROM HEAVEN. He tested me for what nay cause flare ups, put me on the foot baths and hooked me up with electro therapy. STOPPED ITCHING. OK? OMG. I CAN SLEEP NOW.
Happy you found something that works for you! :)
I think EVERYONE should go see alternative dr to get to the ROOT CAUSE OF WHY the immune system has gone off the rails. Also he has me soak tampon in regulat pro and water 1:2 ratio then insert for 2 hours. This has ELIMONATED ANT BITING SENSATION NO longer need topicals. Obviously I went at my own risk; you go at your own risk.
What are foot baths ?
@@Smokillo some people will tell you these are BS . Good for them. Ummm the foot bath removes toxins. The water turns to looking like -sorry this is gross- diarrhea. I had always been a skeptic until I noticed I could have a cocktail without the usual headache!
We are a mirror image of each other.
Im not diagnosed but it looks like what I’m experiencing for a year except I don’t have much pain but very very very bad itching. It’s horrible everyday it itches me… I’m seeing my dermatologist soon I’ll mention this disease to her
i only have pain during sex it burns me a lot and when I’m peeing and doing the other one it hurts a lot I did a lot of test no yeast infection or bacterial infection and no sexually diseases
I’ve been crying so much recently I was depressed for 4 years and I just ignored all of my symptoms and in January and I also couldn’t remember what my vulva looked like and I have been checking my vulva so much and I’m so scared it going to disappear!! I am already fusing and my clitoral hood has almost fully covered my clitoris. I’m just a mess. Especially because I’m 32 and I know the disease gets worse with age so it’s just so much!!!
Hi, Rachel. Your feelings are totally valid; I and many others have felt similar things. Can I ask how you are treating. Research as show that proper and consistent treatment helps keep inflammation at bay, slow the progression of the disease, and reduce the likelihood of developing vulvar cancer. I can say that once I started to treat, my vulva stopped fusing/resorbing, my color returned, and I am not two plus years in remission.
@@thelostlabiachronicles that is awesome!! I’ve been on betamethasone valtrate for a couple months and I just got prescribed estradiol a couple weeks ago so now I’m using both. The cuts and burning has gotten so much better but since starting the estrace I’ve had a lot of spotting so I’m not sure if it’s from that but I’m hoping they both stop fusing!! Thank you for posting your story it helps out so much because I couldn’t find too many experiences just doctors talking about it.
@@rachelgonzalez2488 Hmm, so I'm not sure about the spotting and estrace - I'd recommend bringing that to your doctors attention just to be extra safe. But you are doing all of the right things. It can definitely take time for things to settle. According to the literature, it takes folks with vulvar LS approximately 3-6 months to get into remission. I have a blog post on progress and LS that you can check out at www.lostlabia.com/progress if you want to learn more. You got this! I'm here for you if you need.
Hi I can relate so much to you because I have the same issue and only just today I have found out I have this.. i feel so sad and just crying... I just want this to stop.. it's the worst most uncomfortable thing in this world! I also feel burning higher up like feels like my ovaries are burning 😭 I just want this burning to end.. did the steroid ointment just help you totally or did anything else.. my gynecologist prescribed me the same
ointment.. also get same difficulty and pain and bleeding after intercouse... I pray this burning just ends 😢😢😢
Aw, so sorry to hear you are recently diagnosed. It's SO scary and hard in the beginning. If you ever want to chat, I do offer calls which you can learn more about here - www.lostlabia.com/supportcall. I also have a free eBook if you prefer learning through reading at www.lostlabia.com/lsebook - I mostly used steroids, but I also worked with dilators, pelvic floor PT, stimulating my vagus nerve, and working with a sex therapist. Check out my video called how I stay in remission for more details or we can always chat more in dept on a call. Just to give you some hope, as bad as I was, I eventually got into remission (it'll be 3 years of remission in May) and now have pleasurable, pain free sex. With so much love,
@@thelostlabiachronicles I will definitely look into this.. I also get alot of burning higher up, did u experience this ? .. like it feels like my ovaries ( where they located) or the part we get period pain.. it literally feels like it's burning so I don't know if this is linked to LS ... I went to the doctor he said u can't say your ovaries are burning there's alot of stuff down there 🥴 .. so I have got a scan coming up.. I've had many before aswell. Also when I went into labour I got a bad tearing in my vagina aswel... So it's all very mentally draining ... 😢😭
Never wish for an STI. I wish I cld change my past & erase all of that.
Where can we find Heather's book?
I am sorry everyone is going through this. My doctor thinks I have LS but wants to do a biopsy to confirm. Has anyone had a biopsy, I am really scared.
I did. It was confirmed. Not fun but at least it's definitive. Best wishes.
Hope your biopsy was good news. I'm scheduled and am apprehensive.
@@jazzycat312the good news is not cancer but it did confirm lichen sclerosis. I'm on my 3rd prescription. It has gotten somewhat better but the itching is still bad. Trying Palestinian Olive soap for cleaning the area. Just diagnosed in March 2024.
@halstead58able good to hear there's no cancer. How long have you had symptoms before being diagnosed?
I've had symptoms for at least 10years and feel scared that it could be cancerous after all this time. It was just itching that would come and go...and now I'm having the white patches of skin. I'm scheduled next week for gynecologist exam.
@@jazzycat312 hard to say. Sex was becoming painful and was going into menopause so assumed it was that 8 years ago. Stop being active. The last 1.5 years the itching, and lesions, then most recently the skin irritation. I tried everything and then went to my doctor.
Where do we apply the ointment... outside or inside the vulva?... 😣😣
Hi, B N. Thanks for watching and taking the time to comment. The ointment is applied to the vulva, which is the external genitalia, not the vagina, which is the inside genitalia. If you want specific guidance on exactly where, this would be a question for your provider. Ask them to show you exactly where on your vulva they want you using the ointment. With love, Jaclyn
Getting a biopsy to confirm lichens. So miserable. Comes and goes. Clobetasol doesnt always work for me
There are a ton of different steroid ointments they can trial as well as calcineurin inhibitors (non-steroidal ointments). It can take time for the medication to really calm things - it tasks approx. 3-6 months to get a patient into remission when using steroids properly, and for some it can take more time. There are things you can do to manage your symptoms in the meantime; what symptoms are you struggling with.
I have a gynae appt in 2 wks but I now wonder if this is my problem. I would be happy never to have sex again.
Please let me know if dermatologist can help or gynecologist?
I'm making a video on this but the short answer is either are good, what's more important is if they are specialized in or knowledgeable about LS.
@@thelostlabiachronicles Thank yiu Labia for the response. But gynecology doctor says to see dermatalogist and dermatologist says to see gynocologist. Sometimes they say physician too...This is very confusing on whom to approach and ask for right evaluation
@@pallavipallavi6826 Both specialities should be equipped to deal with LS. It sounds like neither understand what it is. Try researching a derm or gyn that knows that LS is. You can check out this LS provider directory: www.lssupport.net/searchable-lichen-sclerosus-provider-database/ hopefully you can find a derm or gyn on the list near you. Please read through the disclaimer at the top of the page.
@@thelostlabiachronicles Thank you very much
Can one get lichen sclerosis in anal regions?
yes
I'm sorry in advance, this is going to be long.
I feel your frustration. I was born with a very rare hereditary skin disorder called Epidermolytic Hyperkeratosis (EHK) also called Epidermolytic Ichthyosis (EI). It has thickened hyperkeratinized skin and is from head to toe. If you look it up you can see pictures on Google.
Anyway I keep mine looking pretty good. Some who don't care for theirs as well or maybe don't know how, can get really bad. It tears , we get blisters, can't perspire, and our skin reproduces 300 times faster than yours does. I know it sounds like an exaggeration but it's not. The ONLY positive thing and EHK is how extremely quickly we heal and that we don't wrinkle easy or scar easily at all.
I had a second degree burn from accidentally spilling a pot of boiling water on myself and the whole right side of my chest and abdomen got the worst of it. No scars or permanent damage. Unfortunately since most doctors including Derms don't know anything about EHK they don't know how to treat it, and Diagnosing any other skin issues can even be challenging because nothing ever appears as it should or textbook on me. The EHK affects me from head to toe but doesn't affect mucus membranes so the oral cavity, throat, vagina, inside the lips of the vulva and barely on the outside of the vulva.
Ten months ago Nov 2023, I got a "spot" on my thigh and it was just that one spot for six months then in May 2024 my doctor put me on an oral steroid for lower back problems. A week after getting off of them I had another couple of spots appear. Very flat and smooth to the touch, bright red, and extremely itchy.
I finally went to a Derm which I honestly hate doing because I have to educate them on the EHK nine times out of the, but I went in to find out what these spots are. So he does a skin scraping on one, a small one to test for ringworms. I knew it wasn't that because no one had caught it in that six months even with direct skin to skin contact. It came back positive and he put me on an antifungal cream. I used it to humor him. By day three of using that I popped up with like 11 more of these spots all up my thigh, groin and lower abdomen. I stopped using it. It wasn't helping. After doing some research I discovered that dead skin cells can cause a false negative for ringworms. Since my skin reproduces so fast I have layers and layers of dead skin cells, so I went to a different doc in the same clinic and she done another skin scraping only this time she done it on multiple lesions and as I suspected it came back negative. No ringworms. It was a false positive. So then she done a biopsy to check for nummular eczema but only the EHK showed up. Also this doesn't appear as eczema. No bumps open sores. I think she got in over her head with the EHK and instead of just saying so, she completely avoided me from that point on I called four times in a two week period to see if she can do another biopsy from the center of a lesion instead of on the edge and what our next steps were going to be, and she never returned my call.
Fast forward, it's now 10 months from the first one appearing. I went to a gyno and although my bottom (anus and all inside my but cheeks) and my vulva are white with what looks like a film that won't come off, several lesions, and me telling her about my vulva tearing, severe itching especially on my bottom in between my cheeks and anus, sometimes just uncomfortable, fissures, and that at one point, just like on my skin that the texture of my skin down there got really weird during this huge outbreak of these lesions. She told me that because I don't have any fusion or the typical white areas (that she's used to seeing. Remember I said nothing appears as expected on my skin) that she doesn't think it's lichens and it must be my skin problem so I need to go to a dermatologist.
For years I've had to Dx my own ailments and advocate for myself only to later have them confirmed because doctors won't take the time to educate themselves. It's frustrating.
I have yet to officially be DX with Lichens or morphea which I suspect possibly both. I have these spots all over my body except my face and hands. So I'm learning as much as I can about it in hopes of finally finding a Derm who can give me a DX. Those once red and inflamed spots are now hypo pigmented and are either white or light pink. I put off a lot of busy heat due to the EHK and inability to perspire so I'm shocked that any are actually white as my skin is always red.
Anyway, your videos have been a wonderful blessing so thank you for putting yourself out there to help others of us dealing with this.