![Maria Marina](/img/default-banner.jpg)
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Maria Marina
Добавлен 27 янв 2023
Hi and welcome to my RUclips channel where I'm talking about lichen sclerosus - a "rare" skin condition, which can be found pretty often. Here I'm doing my best to gather relevant information about this disease based on my own experience, experiences of other people with LS, who decided to share their thoughts with me, medical articles and doctors' opinions.
Of course, it doesn't mean that you have to believe everything you see - always check with the doctor you trust before using any of the products, therapies or treatment options, because every case of lichen sclerosus is individual, and every organism can react differently to the same treatment.
Disclaimer: I'm not a medical professional. I'm a patient who has LS since 2018 (confirmed in 2019).
Stay safe, treat yourself well, and thank you for watching my videos!
Of course, it doesn't mean that you have to believe everything you see - always check with the doctor you trust before using any of the products, therapies or treatment options, because every case of lichen sclerosus is individual, and every organism can react differently to the same treatment.
Disclaimer: I'm not a medical professional. I'm a patient who has LS since 2018 (confirmed in 2019).
Stay safe, treat yourself well, and thank you for watching my videos!
Questions&answers about lichen sclerosus
You asked, I answered: questions about lichen sclerosus from the comments ❤️
00:00 Intro
00:49 Are Tacrolimus and Clobetasol same?
01:51 Is laser a good option for treating lichen sclerosus?
04:06 Where do I get information from?
04:58 Where can you buy Neauvia Rejuvenation Rose gel?
05:52 Can LS discolouration go away?
06:47 Can diet help with lichen sclerosus?
07:53 Can lichen sclerosus develop without triggers?
How steroids and Tacrolimus work: ruclips.net/video/94PK6b1Q4hY/видео.html
Lifestyle with LS: ruclips.net/video/kyPDHy2vXPc/видео.html
___________________________
Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see it, who needs support or ...
00:00 Intro
00:49 Are Tacrolimus and Clobetasol same?
01:51 Is laser a good option for treating lichen sclerosus?
04:06 Where do I get information from?
04:58 Where can you buy Neauvia Rejuvenation Rose gel?
05:52 Can LS discolouration go away?
06:47 Can diet help with lichen sclerosus?
07:53 Can lichen sclerosus develop without triggers?
How steroids and Tacrolimus work: ruclips.net/video/94PK6b1Q4hY/видео.html
Lifestyle with LS: ruclips.net/video/kyPDHy2vXPc/видео.html
___________________________
Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see it, who needs support or ...
Просмотров: 159
Видео
Peptides and lichen sclerosus: really?
Просмотров 207Месяц назад
Is there a truth... I mean, a holy peptide serum that can cure us from LS? WARNING: in some countries, like the UK, peptide injections (exactly liquids in vials, aside from food and food supplements) are legitimate for research purposes only. Also, American FDA banned 17 peptide treatments in February 2024. The FDA cites "risk for immunogenicity, peptide-related impurities, and limited safety-r...
Possible oral treatments for lichen sclerosus
Просмотров 385Месяц назад
Let's take a look at potential oral treatment options for lichen sclerosus. 00:00 Intro 01:02 Methotrexade 03:56 Oral topical steroid treatment with complete remisson 04:25 Otezla or Apremilast 05:33 Oral retinoids Video about Lichen Planus and Lichen Sclerosus: ruclips.net/video/SOAH4bDg9UU/видео.html Article from April 2024 about successful Methotrexade treatment: pubmed.ncbi.nlm.nih.gov/3851...
Two types of lichen sclerosus skin damage
Просмотров 5583 месяца назад
How to know if this is lichen sclerosus, and what medication/treatment option you should try first? Let's shortly talk about skin thickening and thinning due to lichen sclerosus. Video about stages of lichen sclerosus: ruclips.net/video/1JH4f4Q72g8/видео.html Research about collagen in LS: pubmed.ncbi.nlm.nih.gov/36509210/ 00:00 Intro 00:59 First type of damage: skin thickening 02:14 Second typ...
Tacrolimus & Pimecrolimus side effects
Просмотров 5284 месяца назад
Any medication have downsides, even if it's demonstrated an excellent safety record. Let's talk about possible side effects from using Protopic ointment and Elidel cream. Steroids side effects: ruclips.net/video/ZNAiDp_xDd0/видео.html How popular lichen sclerosus creams work: ruclips.net/video/94PK6b1Q4hY/видео.html 00:00 Intro 00:45 General info about Protopic/Elidel 01:32 What do Protopic/Eli...
What can be mistaken for lichen sclerosus?
Просмотров 3435 месяцев назад
Vulvovaginal disorders and conditions can be sometimes confusing and mistaken for one another because some of them have pretty much similar symptoms, especially in the beginning. In this video I'll list popular disorders, which cause concerns among people having them. Let't face it: it is possible to be wrongfully diagnosed with LS or with other disorder, which can, actually, turn out to be LS....
Bacterial vaginosis vs lichen sclerosus
Просмотров 2215 месяцев назад
Woke up with itching and burning? Don't hurry to panic and blame LS! Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see it, who needs support or just basic information about lichen sclerosis. Please subscribe and hit the bell button if you don't want to miss the new content. Any questions are welcome in the comments! This video is based on the...
What to wear with lichen sclerosus? For women and men
Просмотров 3898 месяцев назад
Please bear in mind that fashion now is divided on men and women style, but in this video anyone can find a good advice ❤️ 00:00 Intro 00:34 Advice for women 02:15 Advice for men Thanks to my friend Michael for this amazing hoodie ❤️ Remember, guys: you're enough. Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see it, who needs support or just...
Who shouldn't use steroids with lichen sclerosus? Skin thinning and thickening
Просмотров 5339 месяцев назад
Why steroids cause burning with lichen sclerosus? 00:00 Intro 00:22 Two types of skin damage with LS 00:28 Three types of patients with LS 02:07 If steroids don't work with skin thickening Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see it, who needs support or just basic information about lichen sclerosis. Please subscribe and hit the bell...
Retinoids for lichen sclerosus. I was WRONG!
Просмотров 3379 месяцев назад
Who can use retinoids (Tretinoin) for lichen sclerosus? Doctor Borghi's article pubmed.ncbi.nlm.nih.gov/26243060/ 1994 research on oral retinoids for atrophic LS: www.sciencedirect.com/science/article/abs/pii/S0190962294700214 (M.T. Bousema, U. Romppanen, J-M. Geiger, M. Baudin, K. Vähä-Eskeli, J. Vartiainen, S. Vuopala) Previous video: ruclips.net/video/94PK6b1Q4hY/видео.html Thank you for wat...
Pay attention to your lifestyle with lichen sclerosus
Просмотров 80811 месяцев назад
How to manage lichen sclerosus? Is there something wrong with your everyday life? 00:00 Intro 01:38 Look at your everyday routine 02:25 Examine your environment 04:02 Get closer to nature 04:17 Don't sit constantly - exercise 04:47 Moisturise, moisturise, moisturise 05:50 Find a good lubricant Thank you for watching this video! ❤️ I'll appreciate if you send the link to someone who needs to see...
Lichen sclerosus in men
Просмотров 3,6 тыс.Год назад
Let's talk about how lichen sclerosus affects men, what could be the aftermath and how to try manage symptoms (except for meds) and partnership during the disease. 00:00 Intro 00:21 General info 00:56 Symptoms of lichen sclerosus in men 01:42 Where to seek help 02:32 How white patches appear 03:12 Circumcision 03:26 What do you do? 04:47 Partner's support How to support a LS patient: ruclips.ne...
Mental help with lichen sclerosus: how to choose a good therapist?
Просмотров 229Год назад
The question of how to wisely choose a psychologist is very important for people who struggle with an incurable disease. Their psyche is already in a tender state, and the specialist has to not only help but not make things worse at the same time. Of course, such choice may be strictly a matter of personal preference, but here're my thoughts on the topic in case if you're looking for an advice....
What you need to know about lichen sclerosus remission?
Просмотров 1,1 тыс.Год назад
What you need to know about lichen sclerosus remission?
How to support a lichen sclerosus patient?
Просмотров 388Год назад
How to support a lichen sclerosus patient?
Can you stay healthy with lichen sclerosus?
Просмотров 2,2 тыс.Год назад
Can you stay healthy with lichen sclerosus?
Work of the most popular lichen sclerosus creams. Bonus treatment that hasn't been discussed before
Просмотров 1,7 тыс.Год назад
Work of the most popular lichen sclerosus creams. Bonus treatment that hasn't been discussed before
Why lichen sclerosus causes cracks, ulcers, skin breakages? Collagen treatment for LS: yay or nay?
Просмотров 1,3 тыс.Год назад
Why lichen sclerosus causes cracks, ulcers, skin breakages? Collagen treatment for LS: yay or nay?
Topical steroids and lichen sclerosus: help or skin damage?
Просмотров 1 тыс.Год назад
Topical steroids and lichen sclerosus: help or skin damage?
Triggers of lichen sclerosus: can other autoimmune conditions cause LS?
Просмотров 2,1 тыс.Год назад
Triggers of lichen sclerosus: can other autoimmune conditions cause LS?
Lichen sclerosus prevention: is it possible?
Просмотров 503Год назад
Lichen sclerosus prevention: is it possible?
How does lichen sclerosus happen? What makes immune system fail us?
Просмотров 1,4 тыс.Год назад
How does lichen sclerosus happen? What makes immune system fail us?
Cosmetologists will trick you into these procedures for lichen sclerosus
Просмотров 491Год назад
Cosmetologists will trick you into these procedures for lichen sclerosus
DOs and DONT'S with lichen sclerosus. Part 3
Просмотров 2,9 тыс.Год назад
DOs and DONT'S with lichen sclerosus. Part 3
Being positive with lichen sclerosus is a crime?!
Просмотров 756Год назад
Being positive with lichen sclerosus is a crime?!
Take care of your mental health with lichen sclerosus
Просмотров 589Год назад
Take care of your mental health with lichen sclerosus
What to do if you can't go intimate with lichen sclerosus? Sex with a skin condition
Просмотров 3,6 тыс.Год назад
What to do if you can't go intimate with lichen sclerosus? Sex with a skin condition
Lichen Sclerosus and lichen planus: what's the difference?
Просмотров 9 тыс.Год назад
Lichen Sclerosus and lichen planus: what's the difference?
Can circumcision lead to remission?
A lot of doctors believe that it can, but, in fact, the circumcision helps to remove some of the affected skin, prevent moist from gathering in the folds (and the additional inflammation) and gives better access to topical medications. LS is an autoimmune disorder, which means that something is wrong inside the organism. Damaged skin is the consequence, not the reason. And so after the circumcision, a patient will need a topical medication (for long use) to prevent further inflammation and skin damage.
@@lifewithlichen is the circumcision an advantages for men? Or it can have negative impact latter?
@@user-kh7jl3di3r it all depends on the patient, his physical features and LS stage. I heard from men who have LS that the disease made it hard to pull skin down, and also that moist gathered inside folds, creating bacterial growth and inflammation. In those cases, I'd say that the circumcision was a necessary measure. But some Internet articles say that the circumcision can lead to adhesion in the glans area and reduction in sensation in the head of the penis. It's always better to find a specialist (better 2 or 3 of them) for a through examination and an authoritative conclusion.
Thanks for your valuable information.
should i still use steroid cream even if i havent had a flare up?
Your doctor has to give you the scheme of correct using. Usually, people continue to apply them to get the remission (which requires prolonged use), but not as frequently as during flare ups. I saw videos where patients said they proceeded with steroids for just 2-3 times a week. You can check with your doctor. Here's what I found in Google: "Initial treatment: For the first two to three months, you may need to apply a strong steroid cream regularly to the affected area. Maintenance: After symptoms are under control, you may only need to apply a medium strength steroid cream twice a week."
Hi can i send you photo tosee if mine is lichen
Hi. I'm not a doctor, so, unfortunately, I won't be able to tell you for sure. But I can try and tell you my personal opinion, if you want. My mail is lifewithlichen @ gmail . com (please delete the excessive blanks)
@@lifewithlichen i already pm you🙏
Can a person develop both?
So, the article in the Internet says: "Yes, it's possible to have both lichen planus (LP) and lichen sclerosus (LS). These autoimmune diseases can occur together, but one disease doesn't cause the other. They can both affect the genitalia and have varied clinical presentations."
hello if ls gets on the penis and you get rid of it with ointments will it leave dis coloration and any solutions to fix this
Hi! It all depends on in what stage you catch LS and which ointment you'll use. I saw reports that said that corticosteroids helped some men to clear up the discolouration on the very early stage. But there're other solutions; if the discolouration was caused by skin thickening, you can try photo therapy or laser skin removal (CO2 laser). If you're experiencing skin thinning, PRP is worth a shot. The thing is if you get rid of symptoms of LS, but it has already caused you some skin damage, you'll have to deal with the skin damage not with ointments but with something else, because ointments rarely help to revert the skin to its initial condition
@@lifewithlichen thanks
@@MakaiWoodliff Hope this helps
Thank you
Thank you so much for watching!
Have you heard about exosomes small nano size vesicles from umbilical cord stem cells they apparently help with skin the most because of there size that's the next treatment I'm trying
Hi, thanks for interesting info! No, I haven't heard of this type of treatment (only heard about stem cell therapy, which is getting quite popular). If you feel like it, please share your experience after this procedure 🙏🏻
😂❤sds😢😢😢😢😢
Sorry, I'm not sure what you mean
What if it's not itchy at all ? But white wrinkled patches !
It can still be LS, but it's always best to perform the biopsy to know for sure and get the right kind of treatment. You see, I have only pain/burning, almost no itch (only very, very rarely, like once in three-four month for a few days). Please make sure of what exactly you have because there're a few other skin conditions that can give you skin patches 🙏🏻And just for the future, white wrinkled patches, if they're a result of a buildup, skin thickening, not thinning, can be removed by photo therapy or fractional laser (also some people find PRP helpful, especially when they're not sure if it's thickening or thinning). But if it's an atrophy, better be very, very careful with traumatic procedures 🙏🏻
@@lifewithlichen I have white wrinkled patches on both of my legs. Doctors called it vitiligo. Won't go for biopsy. I'm so upset. Vitiligos can't have wrinkled skin. I have wrinkled what patches
@@ifazahan2153 Yes, you're absolutely right, vitiligo doesn't give a wrinkled skin - it's just a discolouration (my uncle has it). I'm so sorry your doctor doesn't want to perform the biopsy. Maybe it's better to ask for a second opinion? Please hang on. Another doctor can prescribe you with something like steroids, at least, to try out and see if it helps
@@lifewithlichen can extra genital LS turn into cancer ever ? Or can it reach to my vaginal walls ?
Hi Marina, may be youtube deleted my comment because I included a link, but have you seen the study from 2009 about oral gamma-linolenic acid (from primrose oil) that had success for Lichen Sclerosus? I can't access because of the paywall but if you google it, it's called "Evening primrose oil: A possible new treatment for vulval dystrophy", M. A. H. Al-sebai, 2009. It's also referenced by other clinical trials. You may have seen it, but there is not much information about how promising it is anywhere.
Actually, it's from 1993, just published online in 2009. From "Journal of Obstetrics and Gynaecology Volume 13, 1993 - Issue 3"
Hi, thank you so much for the interesting information and extensive research ❤ I tried to dig into the topic. So, on some forums GLA is being recommended as a food supplement to patients (patient . info). But I couldn't find any accounts of the patients themselves on that matter, unfortunately. Also, I found an article "UNDERSTANDING LICHEN SCLEROSUS" on A Woman's Touch - Sexuality Resource Center, released in 2012, which says: "Direct benefit of GLA (borage oil), or omega 6 fatty acids, has not been reliably shown. Given the increased proportion of omega 6’s in our current diets, we advise against the therapeutic use of omega 6 oils despite their theoretical benefit." It looks like the medical trials didn't go further, or maybe the researchers didn't have enough money to study GLA effect more properly (it's not uncommon in case of LS - it's not considered to be a popular disease, and there's not much funding for studying this problem).
@@lifewithlichen Thank you very much for sharing that! Very interesting. I found the article with some help from an expert and the results indicate: "After 16 weeks of treatment, six out of the eight patients had no symptoms and two had mild symptoms. No patients had sleep disturbances. Four patients had a normal vulval appearance and four had mild dystrophic changes. No side effects were reported during the study period and the compliance with treatment was excellent. Eight weeks after discontinuation of evening primrose oil, five patients were still asymptomatic, one had mild and two moderate symptoms. Six had no sleep disturbances, one mild and one moderate sleep disturbances. Three had normal vulval appearance, two showed mild and three moderate dystrophy." (for some reason yt deletes my comments when I post the link, the study seems to contradict other information) The dosage used was Epogam, 4 g daily, and given orally for 16 weeks. Epogam was suddenly discontinued in 2002 where "Two preparations based on evening primrose oil have had their NHS prescribing licence revoked by the Medicines Control Agency." The other one was Efamast. Allegedly on efficacy grounds. The article alleged no side effects. (The Herald Scotland) It claimed that Epogam and Efamast were on prescription for a variety of conditions. Interesting that they suddenly were discontinued based on efficacy where they seem to have known benefits. I appreciate the possibilities you mention concerning on the scarcity of trials!
@@mgrward1 Wow, that's a nice piece of info, thank you! 🙏 They discontinued so many meds that I used for years for asthma (for example, inhaler Intal and pills Eurespal) that I'm not surprised at all. It's a shame, though, that medical professionals didn't have a proper chance to proceed with the study of Epogam and Efamast against LS and get more results :(
Thank you
Thank you so much for watching!
I have this... I did Mona Lisa about 10 years. it worked.. I went into remission... its back, so I'll have to go back in and have it redone. it HONESTLY did work.
I'm very glad to know that your case of LS wasn't the one that doesn't go well with the laser, this is really a good thing because you were able to find something that brought you a long lasting relief. I hope that another one round of treatment will bring you an even longer remission this time.
I had the mona lisa treatment, worked for about 10 years. now its back again. I'll have to have it touched up again.
I'm very happy to hear that you found your treatment that works
Im facing similar symptoma like LS, but still idk its causes of balanitis or LS. Because now there is little discolouration in brown and also my penile uthera opening swellen (looks like lips). No pain,no itchyness, no redness. Im uncircumised.
I'm sorry to hear that you're having these troubles, but I hope that your diagnosis will be figured out soon. Have you tried a biopsy? Usually, after the doctor takes a sample of your skin, they are able to give you the right diagnosis. Also, have you tried corticosteroids against swelling? No itch and no pain can mean a number of causes, for example, bacteria. Have you tried to ask your doctor for a test?
@@lifewithlichen tomorrow i will see a STD doctor. I still dont know which doctor to console (dermatologist or urologist).
@@phuvaneswaran4482 It's always better to hear second and third opinion because your health is the most important thing, and to find the cause earlier is easier than trying to fix it much later. Wishing you all the good luck in finding out what's going on
How long should I keep it on my face? i can’t sleep with it on ! I’m now without sleeping for 2 nights😭
I'm sorry if it caused you burning. I was talking about genital area, and I'm not aware of how Protopic should feel like when you use it on your face, but if you'd like to hear my opinion, I'd say you should immediately stop using it if it burns so severely. I found one thread on Reddit, which can be useful for you (please delete all excessive blanks in the link) www. reddit .com /r/ eczema/ comments/ 1547siq/ my_face_is_on_fire_and_i_couldnt_be_happier/
Can it take years to see big changes in the skin?
Absolutely possible scenario. But with serious and constant inflammation, it's more likely to take months
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Hi Maria. Do you have white patches or only inflammation (for example redness)??
Hi there! I have skin atrophy, 1 atrophic white patch (not hyperkeratosis), redness, burning and big red patch, which is basically an area without one outer layer of skin, if that makes sense
I can understand your condition. I am a man that did circumcision, however lichen persists. I had big red and white patches, burning sensation and two blisters (!). I coudn't even walk. However i found a very experienced doctor who helped me a lot. I followed co2 laser twice and my problem has improved significantly. I had written to you about him in the past. He is in Greece. I don't know where I would be now if I hadn't found this doctor. Topical steroids and calcineurin inhibitors were completely useless in my case. After 2 sessions of laser my problem has improved significantly but when i sweat (for example if i play football, basketball etc) redness and burning sensation return for a while. This is my biggest problem now. Can you make a video for oral immunosuppressants? For example methotrexate, otezla, retinoids? Stay strong ♡
@@Giorgos7-zg2ib I'm really sorry to hear about how much you had to go through, but what makes me happy for you is the fact that you were able not to give up and found the right doctor for yourself. This is a great job. Sweat can bring many troubles to the brittle skin. You, probably, can't use antiperspirant in the area, right? Have you tried to restore your skin's natural barrier by, for example, HA injections or collagen, or something else? I will try to find some information on oral meds in LS cases, thank you for the suggestion! And thank you for your kind words. I wish you to find the solution for the situation that is bothering you right now and stay in remission for the rest of your long and, I hope, very happy life 🌹
Thank you for your wishes qnd your kind words and for your effort to raise the awareness about this skin disease. I know about HA injections but currently I consider following a third co2 laser session. Afterwards maybe i follow 3 prp sessions to maximize the results. Do you believe that prp injections can help with burning sensation? Wish you the best for your life♡
@@Giorgos7-zg2ib Thank you for your contribution to this channel! I went though 3 PRP sessions. Yes, it helped with burning for a few months (I was upset because I read that some people get relief anywhere from 9 to 13 months, and I got only 2-3). But I dare to assume that with your type of skin damage, it should work much better than with mine ❤ Good luck with the 3d laser session and PRP! If you feel like it, it'd be nice to hear about your progress. P.s. I've already found information about those 3 medicines you mentioned, now I just need to find some strengths to record and edit the video. Once again, thanks for the topic!
A well known trigger for auto-immune diseases is Epstein-Barr virus and a part is indeed also the genes and sometimes medication as well. Under the "right" circumstances they can pop up or be activated as some say. And indeed once you have one, the chance of developing more is possible. I have PA (B12), Hashimoto, Systemic Lupus, Colitis and Rosacea and the strange thing is, none in my family have an auto-immune disease, sadly my son also has the B12 thing but caught it very early with him (but before I had him none in my family)! Since a few months I have spontaneous tears and horrible pain and burning sensation, biopsy did show active infection and scarring tissue, but since I do not have white spots LS is dismissed. It can be something hormonal or the Lupus of course, time will tell.
Thank you for the valuable information! I'm sorry to hear that you have a multiple autoimmune syndrome, I can't imagine what you're going through, but I hope that your family is supporting you. In case of your son, I really believe that there's a way to prevent him from getting any other autoimmune conditions, if he has just one so far. And the interesting thing is that no one from your family has any autoimmune conditions. If you don't mind me asking, did/have your other family members, like your parents, develop/ed any at old age? About your biopsy: did the doctor take the sample of your scar tissue during the biopsy? LS doesn't necessarily mean presence of white patches, it can be just the scarring or red area, or atrophy, etc. But, in any case, I wish you to find the right treatment to get rid of burning and tears 🌹
No nobody with old age auto-immune as I know, my parents are both gone and do have a few old aunts left. My grandmother from fathers side died very young, my father always said rheumatism as she walked almost double at age 45, she passed way before I was born and was barely mid 50's. My father did develop diabetes type 2 but drank heavily and without the alcohol he had a normal sugar levels. He died of a rupture in either the liver or pancreatis, my mom passed due to stomach cancer (had also sometimes the "pink" shots, so could be B12 as well but no doctor ever treated her correctly if it was B12 (PA). It would be kind of logical, I have it and my son as well. Lucky I was at it very early for him, he was not even 4 years old when he started the shots. He is now 10 and thinks he does not need them but he is stubborn and healthy as can think. I can tell the exact point where my first symptoms started, was just 2-3 months after the mono slowly went away (Epstein-barr) and my first symptom was sudden sunlight allergy. The biopsy was indeed of the red and painful part, where they found scar tissue, the could not say exactly what it was, just an inflammation of some kind and scarring tissue. Was not a confirmation for LS but did not say it wasn't that either. I do know with Systemic Lupus and painful skin (always thought the Lupus, but can very well be psoriasis or dermatitis (in Holland we call it eczeem, no idea what the English name is). I will see my doctor in 2 weeks, will talk about it again, the steroids I got do work, only have a feeling he is building down to fast, the first 2 weeks worked like a miracle and the 3 week the burning came back, round my period new tears and now seems to be healing a little but still pain and burning... Maybe a new biopsy needs to be done but that would be the second one in less than 4 months
@@metalmiauws You said that your father had rheumatoid arthritis - this is believed to be an autoimmune condition. And I understand that the alcohol was a trigger for diabetes, but modern researchers tend to believe it's autoimmune. My grandma had the same issue with alcohol and diabetes 2 (the doctors believed that alcohol led to it), but now I have several autoimmune conditions, and my dad (her son) acquired Hashimoto before he hit 60. So, I would suggest that it is possible that your father had passed you and your son immune system problems. But you're doing a great job in making your son healthy. You can get the second opinion in another clinic. For this, you'll need to take the sample of your skin that has been already taken during the biopsy and bring it to another doc (no need for the second biopsy if everything was done correctly). But if the biopsy wasn't performed right, than yes, you may need the second one. I checked if eczema can leave scarring tissue, and Google says it doesn't. Also, when you speak to your doctor, you can ask them if your tears look like kraurosis (I hope they don't). Also ask them to check you for skin atrophy, and if where the tears are there's an atrophic skin, then maybe they will recommend you HA fillers/injections or PRP or something else to increase the skin elasticity.
No his mother, not normal rheumatism but the Osteoarthritis (we in Holland call inflamed and breakdown of cartilage or bone both rheumatism). She walked fully bend at 45 and lost a lot of length that age, she passed away at age 53 or 54. But it is possible she may have had a form of auto-immune disease, this was in the late 60's that she passed away and so much more information has been found since. My father had diabetes type 2, due to excess drinking. As well as his father, both died young due to alcoholism, that is why I hardly drink any alcohol (maybe an alcohol free radler once a week in the summer and that's it). But again, in the basis there can be something inherited maybe. It is not ruled out for sure! Great tips, will put them down for sure! Don't think it is kraurosis, no shrinkage so far! Just red and tears. But will ask that for sure as well! It looks more like atrophy as far as I can see via google, the age would fit too although my mom went to menopause at 55, my periods are still normal at 49. Great tips, thank you so much!
And personally I think that fits in well with my other diseases, having also D insufficiency and Hashimoto, also hormonal...
I have read many articles that claim vulvar cancer is always diagnosed or found in LS. Can you reference any articles that say otherwise?
Hi, sure. There's an article "Risk of Development of Vulvar Cancer in Women With Lichen Sclerosus or Lichen Planus: A Systematic Review" ( pubmed. ncbi.nlm.nih. gov/35285455/ - please get rid of the spaces). Then "Characterization of patients with vulvar lichen sclerosus and association to vulvar carcinoma: a retrospective single center analysis" ( www. ncbi.nlm.nih. gov/pmc/articles/PMC10147807/ ), which says that in their cancer control group 48% of women had LS. Here www. hopkinsmedicine. org/ health/conditions-and-diseases/vulvar-cancer it says about 4% LS patients developing cancer. Hope this helps.
Where do you purchase Neauvia Rejuvenation Rose gel ? I can't find stores selling in online
Oh, I'm sorry about that, someone already told me about the same issue. My doctor gave it to me (the clinic's name is Bader Medical, in case you live or visit the UK). I just found this gel on Thea Aesthetics, MorySkin and no1-cosmetics . de (please delete the excessive blanks). Also you can ask around aesthetic gynaecology professionals in your area. But I'm sure there're lots of substitutes. In case you want to find similar products, here are the ingredients: Most important ingredient 3D-FRAKTIONATED HYALURonic ACID GROWTH FACTORS: EGF, aFGF, bFGF, IGF-1, VEGF, TREHALOSE Aqua, Sodium hyaluronate, Ammonium acryloyldimethyltaurate/VP copolymer, Acetyl hexapeptide-8, Sh polypeptide-3, Sh oligopeptide-1, Acetyloctapeptide-3, Phenoxyethanol, Imidazolidinyl urea, Glycerin, Glycine soybean oil, Sodium oleate, Disodium EDTA, Hydrogenated lecithin, Caprylyl glycol.
@@lifewithlichen Thank you !! <3
Мария,здравствуйте. Из каких источников берете информацию?
Добрый вечер. Личный опыт, опыт людей, связавшихся со мной, общение с докторами, форумы общения заболевших лихеном, научные статьи, научно-популярные издания. Все услышанное в моих видео при желании можно и нужно проверить в открытых источниках. Я не имею медицинского образования.
Thank you 🙏🏻 for those excellent videos, you know more than my doctor. Is essential oils in natural soap a problem? Thank you 🙏🏻
Thank you so much for watching! Oils can be a problem if you're allergic, or if your skin is very sensitive. It's highly recommended not to use soap because its PH balance doesn't do any good for the problematic LS skin (dried it up), so probably even not oils but the soap itself can be the problem. Also quite a few of my acquaintances with LS use pure coconut or olive oil (they choose the one of a good quality) and they say that it really helps to moisturise their affected skin 🌹
Thank you 🙏🏻 I will try to find a cleaner with no soap. I made some homemade soap with coconut and karite, might be good 😊
@@carolearchambault7560 You can try a little bit of both oils without a soap on your affected area first, and if you have no reaction, try the soap bar next ❤🌹
Is laser treatment an effective option ?
Hi, it really depends on which type of skin damage you intend to use it on and the doctor who will perform the therapy (and the type of laser you will use). If you have skin thickening, like white patches, than CO2 laser might help. But if you have atrophy, there's a huge chance that it will make things worse. The CO2 laser is meant to create a thermal damage to stimulate collagen production and replacement of damaged skin with new cells. So you can imagine that more damage for atrophic skin can be too risky (I tried it on atrophic skin, it made things worse). But for thickened areas CO2 should be alright. Personally, I saw more pictures before/after with real results after phototherapy than after CO2, but I'm not a doctor, and it's just my individual research. Google Er:YAG (Erbium: YAG) laser, there're some results, you can decide if they're sufficient enough for you. And also I just found out this quote: "CO2 lasers produced more significant results in textural issues like acne scars in comparison to Erbium: YAG lasers." But, once again, your personal research makes a big difference, because you can see the results in the articles and have a feeling what is better for you.
Hi Maria thank you for all information ❤
Which food we need stay away
Hi, thank you so much for watching! ❤ Answering your question about food: there may be some food-triggers, which can make the inflammation worse, or, for example, kill lactobacillus and spoil vaginal microflora, which can lead to a thrush-like symptoms and burning. You can try to keep a diary for a few weeks (I found it very helpful for myself) and watch which food causes which reaction in your body. For example, acidic tomatoes cause my inflammation to grow. Maybe there's something that triggers yours. Also it's important to avoid extremities, like too spicy/hot/fat/highly salty/vinegar rich food. Bear in mind that there're "good oils", like Omega (fish), and "bad" ones (like the cheapest one we use for cooking). The quality of the cooking oil is important. For overall health, over-processed food is not preferable (and health in general influences immune response as well). Food, rich with HA, collagen, folic acid, fiber is great for skin elasticity. But every body is being individually developed, so it's best to try, watch and learn what works best for you ❤🌹
Is Tacrolimus and Clobetasol the same?
Hi, no, they are from different group of medications. Clobetasol is a corticosteroid - an anti-inflammatory medicine, Tacrolimus is an immunosuppressant, which decreases the intensity of the immune response
Hiii!! I have the thickening problem where my skin become white. My doctor suggested me protopic and Moisturizing cream (derma care) what is your opinion about it? Should maybe change the treatment? Because protopic is for the thinning as I saw
Hi there, thank you for watching! Protopic can be used in both cases (with thickening and thinning) because it basically stops the immune reaction that LS causes. The question is: are you reacting well to steroids? If not, then definitely try Protopic. It shouldn't burn the skin, but be ready for oily spots on the underwear. Steroids reduce inflammation, itch and potentially can help fighting with thickening (stop it and maybe even out the affected skin a little bit). Protopic and Elidel stop inflammation and immune response. In some cases (like oral lichen planus) Elidel helped patients to even out the skin as well. So if you tried steroids and got uncomfortable, don't hesitate to use Protopic. If you haven't tried steroids, and you're having itching, maybe it'll be worth trying steroids first. But, in any case, Protopic 0.1% is a good treatment option, which causes less side effects. Also PRP is a nice thing for thickening (painful, but potentially helps more than with thinning). But please bear in mind that I'm not a doctor, and it's always better to discuss with a medical professional 🙏🏻
@@lifewithlichen thank you sooo soo much!! i apreciate a alot your info!
Hi Maria your videos are great thank you for sharing this information it is a great help. Can I please suggest when you put info up on the screen that you leave it long enough to read as some of us are older or just not able to read your information in the videos so quickly. Thanks again Maria and I hope you stay well 😊
Hello, thank you so much for watching and for your kind words! I've been thinking about this issue with the text and how to hold it long enough for the watchers to read and for the context in the video to match. I will try harder in new videos. Thank you for your feedback and advice! ❤
@@lifewithlichen thank you Maria you are wonderful ❤
Thank you for your knowledge. Is Tacrolimus systemic and will it suppress your Immune system? I've read conflicting ideas on it. I am newly diagnosed vaginally and rectally. It took about 10 years to get the right diagnosis. The majority of doctors here in US don't know what it is. I am having trouble with burning pain using Clob. I think my skin is thin down there being post mena pause. The topical retinoids look interesting to me as an alternative. Could I get your opinion?
Hi, thank you so much for watching! First of all, I'm sorry that you got LS, and that it took so long to get you the right diagnosis. I used Tacrolimus locally for almost 5 years, now I switched it for Pimecrolimus. Both do have side effects, and for me, it's a sun allergy. My skin (no matter which part of my body) itches after sun exposure, and I know that it came as a result of using this group of meds. But that was, so far, the only immune-suppressive side effect. Tacrolimus ointment does suppress immune response at your LS-affected area (literally stops T-cells from killing your normal skin cells), but not in the whole organism, if you don't take it orally (pills). But please bear in mind that this is my personal experience, and every organism reacts differently. Topical retinoids are being used more for skin thickening caused by hyperkeratosis due to LS (on the thin skin they can cause irritation), so I would be very careful with them (if you want to try, choose the lower dosage). NIH says: "Acitretin is a retinoid that may be used for lichen sclerosus unresponsive to topical steroids. It is most beneficial for thickened skin". Also NIH thinks that retinoids can actually prevent steroid-induced skin atrophy ("Topical all-trans-retinoic acid prevents corticosteroid-induced skin atrophy without abrogating the anti-inflammatory effect"). On the thinned skin it would be also nice to use rejuvenating gels with HA or collagen (I get back to them from time to time).
Amazing! One short video, concise and on one topic which made it easy to find. Thank you for showing images of stylish clothing. When you first get a diagnosis of LS it is very emotional and confusing. Yet so many pieces of the puzzle fall into place once the doctor figures out the problem. Videos tend to be wide ranging and it is overwhelming to hear too much information at once and wade through an hour’s conversation to get the one piece of information i might be looking for. Thank you!
Thank you so much for watching and for your amazing feedback ❤🙏🏻 It's so true that, getting a diagnosis, people feel defeated and overwhelmed (at the very least), and usually we don't know where to even begin. The stages of refusal, despair and reconciliation change one another so painfully, and when we finally feel ready to do a research, we still can't take too much information at once. Also usually articles (and doctors) sound very distressing, like, "no skinny jeans, forget about this, don't even think about that." I remember myself crying over it. So I really hope that you will find everything you're looking for and feel much, much better ❤🌹
I thought I had cancer 🥹
I'm so sorry about what you've been through morally, I can totally understand it as I had same thoughts in the beginning. The best way to know for sure is a biopsy
Thank you for posting about this. You are so well informed and the information you post is crucial for understanding about this disease.
Thank you so much for your kind words, appreciation of my research and watching my videos! I really hope that my experience with LS will help someone to better understand their situation 🙏🏻 Although some information can become outdated with time, I try to make a post with everything new I find out about LS
You're my last hope please if you can give an reply to my comment I'll be soo thankfull Is there a recovery video? Seeing a doctor here is vine i had std from my partner we never had intercourse with anyone else in our life i think it was gonorrhea but the doctors heres couldn't even give a proper diagnosis or examine the problem they gave countless pills like antibiotics for intercourse pain ... eventually thank fully it got away..i even had dyspareunia doctor prescribe the same thing they didn't even say those diagnosis names i googled my symptoms and now out of nowhere I'm having problems again it itches stinging pain discolor patches if i rub them dead skin type something comes out and it burns so much i think its been two weeks i thought i had yeast infection at first but now these are the symptoms
I'm so sorry to hear that you've encountered not only, from what it sounds, under-qualified staff (at least in doctor-to-patient ethics), but also these awful symptoms. From what you describe, I can say that there's a good chance to get an informative biopsy (exactly from the discoloured patches). I wouldn't waste time for vulvoscopy, honestly. Do it as soon as possible to get the right diagnosis, and then they should prescribe you some cream (like steroids or pimecrolimus/tacrolimus). If these patches are hyperkeratosis (thickening of the skin), they can also offer you something like phototherapy or laser to remove the patches. But if it's a skin atrophy (thinning), do not perform any destructive procedures. Hope this helps 🙏🏻 Please don't hesitate to reach out if there's anything else I can do for you.
Im African American and i have a lot of discoloration on my effected area (vagina) will the area eventually turn brown again?i don't have scratches or tears just discoloration
Hi! I'm sorry to hear that the discolouration has shown up, but it's a very good thing that you don't have any tears or scratches. As I see it, there're two types of discolouration. One - hyperkeratosis. It's when the skin turns thicker in the discoloured area and looks a bit like a scar tissue. This thing can be treated away by a photo therapy or a fractional laser. Second type is just a discolouration without any changes in skin texture. I wouldn't recommend to perform any of the destructive procedures to this one, especially, if you're prone to skin atrophy (or if the atrophy is already present in these spots). But if you have LS confirmed in exactly these discoloured spots, you can try conservative medicine, for example, Elidel cream (pimecrolimus). You can google it and see that in some cases, after 6-12 months of use, pimecrolimus can rid people of white spots. But please, consult your doctor before trying any of that 🙏🏻🌹❤ Hope this helps
Maybe try carnivore diet?
I'm sorry, maybe I got you wrong, but Povidone-iodine wash absolutely can not be used on genitals, let alone the affected by LS atrophic skin, as it causes excessive dryness and will not maintain the special Ph balance in vagina.
Alright, I saw you edited the comment, so probably it was the autocorrection the first time, and I did get you wrong. Different diets can be tried by different organisms, why not, if you don't have pancreatitis or other restraining factors? But the main thing is not to forget that only diet can't stop the LS development.
it hurts really bad i have blisters and skin is very raw all the time treatment not effective praying something changes
I'm really sorry you're encountering this much pain. Have you tried a biopsy to recheck the diagnosis and maybe correct the treatment? Also, have you tried different types of treatment, like steroids and tacrolimus? Praying for you 🙏🏻
I'm sorry but when skin turns white (I'm talking about the areas where you are likely to get LS) it is an indication that you likely have lichen sclerosis (usually a gynecologist diagnoses LS). It's NOT an indication of scarring. Lichen sclerosis is quite likely to cause micro abrasions from friction (skin becomes white and thinner due to LS and that causes the micro abrasions - from simple things like sitting for a while) and this is what will eventually change the texture of your skin in the affected area. So no, you don't get "scars" from this disease until or unless you are scratching the insane itchiness severely and repeatedly. Which you should NOT do because that can definitely cause yourself some nasty scarring if you do it excessively. If you are not properly treating your lichen sclerosis with prescribed medication that STOPS the insane itching, then yes, you are very likely to cause yourself scarring. As for stages? No, when the skin lightens or looks white in areas that's not a "stage" that indicates you likely have LS - again as diagnosed by a gynecologist. The discoloration of the skin is normal. Lichen sclerosis is not contagious. I stopped watching this video as the incorrect information really turned me off. I asked my doctor and my gynecologist about LS. That is where you should look for information on the subject, not a random person on youtube or the internet. Or look at reputable online sources like, oh, the Mayo Clinic. P.S. I've had LS for years. Be careful what you believe online as it's not always accurate.
Well, I'm sorry you didn't like the video, but I also can't agree with some ideas that you named. First of all, I never said that I was a doctor, and that people should listen to only me and no one else. Under my each video, you can find a disclaimer and advice to consult a doctor before adopting anything that was said in my videos. Secondly, LS doesn't ONLY cause the thinning of the skin and abrasions. It also causes the second type of damage - hyperkeratosis, which looks exactly like scarring, and it's caused by a buildup of collagen. What is a scar tissue? It's a buildup that "made primarily of a protein called collagen" (from Cleveland Clinic's website). In cases of LS with hyperkeratosis, the reason is same; you can find lots of medical articles and research about it in respectable scientific communities, so my comparison is fair. Thirdly, itching doesn't have to be necessarily present, like in my own case and in cases of some of my subscribers and friends, who have LS. So, no, scarring can occur from hyperkeratosis, not from scratching. Next. The sudden discolouration of the skin is not normal in some cases (like it was in my case, but most of the doctors I asked help from said it was, ironically, when LS could have been effectively stopped), which leads us to the idea that a biopsy/vulvoscopy should be performed ASAP to find out the truth (not just an examination with conclusions based on nothing). And, of course, I never said LS was contagious, but you'd have known it if you'd really watched my videos. Anyway, I sincerely wish you good luck with managing your condition and getting into remission. Have a nice day.
@@lifewithlichen You are very lucky if you don't have lots of discoloration and especially not the itching. The itching is, by far, the worst condition/pain I've ever experienced in my life. For context, I have had severe fibromyalgia with severe chronic pain for almost 15 years. So much pain that I'm on hydromorphone 24/7, which is stronger than morphine. That said, no pity party here, ever. As for my comment it is simply my opinion, to which I am entitled. Further, I know full well how many people like to self-diagnose (not suggesting that is you) with information online. I simply wanted to state that one should be careful with information they get online especially when they do not see a medical professional for diagnoses. That, I know, happens far too often than it should in today's times. I am Canadian, and basic healthcare is covered here. I am continuously saddened by healthcare that is not considered a basic human right in other countries and that that drives too many people to online self-diagnosis and suffering what should be needlessly when healthcare should be a basic human right and not prevented because of money.
Very interesting, thank you.
Thank you for watching!
You are a great support, and a careing person. Thank you for sharing your information that you have learned and experienced with us.
Thank you so much for your kind words and support, for watching my videos and commenting them, because for me to know that my experience can be useful is the best reward 🙏🏻❤️ I hope that you'll soon find the right way of managing LS and feel much, much better overall ❤️
❤
Thank you for this video, it is very helpful and informative.
I'm glad you enjoyed it! Thank you
Very interesting. I have Celiac Disease, which is autoimmune. Plus I have Irritable Bowel Syndrome, and Gastritis, Osteoporosis. rare bone diease called Olliers Disease with Madelungs Deformity, Arthritis and Asthma, allergies. I've had and have Basel Cell Carcinoma. I will be 69 this month and it seems like a have Lichean Scalorosis.
I'm so sorry that you have to encounter so many health issues, but I'm so proud of you that you're still standing and fighting for yourself. This sounds like a multiple autoimmune syndrome. I believe the immune system state can be checked through immune system blood test. Also some people do a genetics test to find a gene that is responsible for MAS. The early stage of LS can be effectively managed with steroids, if you have thickening of the skin and white skin patches, or Pimecrolimus/Tacrolimus (those two should be taken very carefully with BCC), if you have skin atrophy. I know that adding one more thing to your treatment plan is hard, but it's worth trying to get into remission as soon as possible. And also I read that photodynamic therapy is widely used in treatment of BCC. If you're having white skin patches with LS, phototherapy can be used as treatment for both at the same time. You're definitely a very strong person, who has courage to live and fight with all kinds of autoimmune diseases. I wish you patience, luck, great doctors for a great help with winning this fight. Please do not hesitate to write me if you want to talk or discuss something 🌹❤
Thank you so much for your reply, I appreciate it very much. You have given me good advice, I am new to this diagnosis but have suffered about a year not knowing what was going on. I have spent many nights in tears with the itching and the pain. Thank you again for your help and concern
@@jo-annewilson3670 I really hope that there'll be no more tears for you ❤🌹
@@lifewithlichen ,❤️
Thank you. I’ve definitely had to change what I was wearing over to dresses and skirts. Actually for all women I think it’s excellent advice anyway!
Thank you for your comment! Yes, exactly, or palazzo - they do look like skirt, but they also stylish 👍
how are you now maria ?
Hi, thank you so much for asking. I'm about same, but switched Tacrolimus for Pimecrolimus, holding a little bit of hope for Pimecrolimus to work better. I discovered that some of flareups in my case are being caused by the recurring BV, so probably this information can be helpful. Hope you're doing fine physically and mentally, and staying safe and healthy ❤
What else can we do if we are prescribed the steroid cream to help and manage LS and nothing else is available to relieve our suffering
Firstly, we should figure out if steroids work good or bad for us. If they cause more damage than any relief, than it's time go back to the doctor and ask for Tacrolimus/Pimecrolimus. They are available in most of the countries in a form of a cream or ointment. But if steroids actually help, then there's no problem. The patient has to just regulate their routine with steroids with time.
Thank you so much for your reply, I really appreciate it.
@@jo-annewilson3670 You're most welcome. Hope you stay safe and healthy ❤
i got rid of my lichen sclerosis by detoxing my body. i highly recommend looking into that
Take my sincerest congratulations with this huge step and victory in your life 🌹
What sort of detox
Great video ❤
Thank you!
ok ladies. get in to see holistic dr like chiropractor I go to Superior Health Solutions in henderson NV. He does monthly testing to know which foods activate your itchiness...he also treats you using electric pulse therapy. In addition he had me use a tonic that you soak in a tampon with water THIS IRRADICATED THE VAGINAL ANT BITE SENSATION AND ITCHING COMPLETELY. Now I nly have the external itchng and only if I eat something that agitates it. I also occasionally use zyrtec. THIS IS VERY VERY HELPFUL. The tonic that he had me use is called REGULAT.
Thanks for your information, and congratulations on finding a partly solution! 🙌🏻🌹