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One Woman's Story: Traci Shares her Story of Living with Lichen Sclerosus
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- Опубліковано 10 тра 2017
- Traci bravely and candidly shares her story of living with lichen sclerosus since she was a young girl. From misdiagnoses to ineffective treatments, she has endured a long & difficult journey with this chronic disease.
There is hope and the potential for a happy ending for anyone who suffers from this very challenging disease.
Helping Open People's Eyes (HOPE) - #LSHOPE #LichenSclerosus
If you or someone you know suffers from LS, Dr Newman's office can set up a private phone consultation and add the individual to our private Facebook group consisting only of people who suffer from lichen sclerosus, some of whom have been treated by Dr Newman. The group is a great source of support and information. You can reach Dr Nathan Newman's Office at: 310-273-3344
Wow, this video was horrifying because so many people dismissed her pain and tried to fob her off and normalise her discomfort. Heartbreaking. I have LS and it sucks. Thank you to this personal for sharing their story.
me 2 just diagnosed hubby just thinks il use cream and get better feel like less of a woman
Thank you for your amazing strong woman! I’ve been suffering for over 15-20years. All I’ve ever been told was there’s no cure by only can use clobetaze cream. I’m having my worst flare to date n I think my cliterol hood is fusing to my clitoris n im so inflamed n I wish my vagina would just fall off. I no longer am able to tolerate any stimulation tothe area n sex is so painful that it isn’t tolerated well i tear so easily.
I really need help
@@ilenefardella9666 A lot of people also swear they have some unfusing by doing sitz baths with borax in it.
It mystifies me that more doctors don’t recognize it! It is actually outrageous! The untold suffering for something that can be treated with success is unacceptable! When it presented I knew it was not normal, but I did not know what it was. My treatment was straightforward with a strong cortisone cream, and taking Vitamin D might be helpful. Since starting the Clobetasol (trade name) really made all the difference.
If you have experienced LS for the first time it's really quite scary, I pride myself on being super clean down there, so when my itching started I thought it was thrush and treated it with canestan cream, itgot worse, vagisil, it got worse, in total crisis with itch, bleeding swelling, could not sit down or stand up, phoned the GP. Was seen by advanced nurse practitioner who said it was dermatitis and gave me eumovate cream, no change and was having suicidal thoughts, seen by a GP 2 weeks later who took one look and diagnosed LS. Given Betnovate with a slow improvement, and started eating broccoli salads, and raw foods. The swelling stopped, and I felt I was back in control, awaiting referral to dermatologist for biopsy, LS was coming off an auto-imune disorder. Managing this utter nightmare ,treating it both inside with what I eat, and outside with creams keeps it under control hopefully. Good luck to my fellow sufferers, in my thoughts and prayers.
Good luck your story is like mine but I’ve had no biopsy. By the time I get an appointment it calms down.can’t win!
Lichen Sclerosus ist not diagnosed with a biopsy. It is diagnosed visually. A biopsy does not heal well down there, especially if you have LS. An experienced gynecologist is capable of visual diagnosis and he should know how to treat LS. You can't cure LS, but it can be treated. I have no idea what you are trying to tell us us with your first sentence (( I pride myself of being superclean down there) but washing the vulva too often, especially with soap is neither healthy nor conducive to cleanliness. Women with LS have a vulva skin that is even drier and more sensitive than healthy women. Excessive watching is harmful. A distinction is made between acute therapy during an attack and recreational therapy during the period without an attack. In any case you need a high-dose cortisone, such as Betnovate (Clobetasol or Mometason). Treatment during an attack is carried out for a few weeks. Maintenance therapy is done on one to two evenings a week. The cortisone does not harm the vulva skin, but it does harm the skin on the fingers. Hands must be washed well after treatment. the skin must also be cared for daily with a greasy cream. It`s worth becoming member of a self-help association.
I am affected myself and wish you all the best!
I’m in the middle of getting a diagnosis. Thank you so much for being so vulnerable and willing to share so other woman wouldn’t feel alone. ❤️
Same here. Diagnosed yesterday. I'm still in shock but at least I now know what's happening.
@@christinarelf4040 prayers for peace and comfort and hope that you get excellent care 🥰
@@donnaemerson1008 thank you so much. xx
❤
@@christinarelf4040❤
I really appreciate her honesty. I hope she finds a good partner who values her if that's what she wants.
My heart is broken listening to her pain and suffer. 😭
Another example of our failing medical system. Thank you for sharing.
I never heard of this disease but I can somewhat relate because I have hidradenitis supurativa which has made intimacy out of the question. It's horrible, embarrassing, painful, and disfiguring. My heart goes out to everyone who has LS.
Im 20, ive had this since 15. been diagnosed by an emergency room doctor and treated once while peegnant... it is absolutely consuming my life. This video is hope. Thank you.
I have had LS for at least 7-8 years. It’s a horrible debilitating condition. God bless you for sharing! Thank you!
I have fibromyalgia. I was having the tx she has described. I saw my dr at the Indian Health Services, and she diagnosed me with this. I am currently 63, and when my fibro flares so does all the other diagnoses flare up. I have oral mucosal issues.
I really understand her suffering.
I developed this after menopause. I leaned menopause and hormones can cause this to come on. So painful and distressing. I just got a biopsy today to check for cancer. Apparently, LS is risky for cancer so PLEASE keep up treatment and monitoring.
🦋
So important to use the steroid cream regularly to reduce the risk of vulvar cancer. It’s been shown to be effective.
Thank you for bringing awareness to this disease. It is one that is very difficult to open up about. Most people who know me have no idea I have LS. It is a daily struggle. We need more research $$$$ so the experts can find out what causes this and find a cure. I pray for that daily.
What you said is so true for me
I agree, I feel like it's a struggle every day. Pain every day. I hope u can find relief also, sister
I am 31 years old and have Lichen Sclerosus ! It sucks having this chronic disease ! Glad you talk about it and raise awareness for this condition.
After the past couple weeks....and listening to this poor sweet woman, plus several other videos on my BFF'S advice,, I am going Monday, with this information in hand. I think that this very well could be my problem. God speed to all those who have this wicked and painful condition. I'll have you in my prayers! ❤😢
Im in Australia and Im 76.Ive had LS for many years. I try to talk to other women about this. We need to spread the word.as much as possible. Albeit very difficult.
After years of doctors telling me the same things, I finally got diagnosed with LS and have started treatment. I know it isn't a cure, but I feel better than I ever have and am so thankful for the doctor who actually took the time to look and test what it could be.
What did u use
I was diagnosed not too long ago with lichen sclerosis not long after menopause. I'm watching this video because I've been in bed for a week tortured by this disease. My vagina has already changed. This sucks and thank you for telling your truth.
"Oxalates are ruining your health with Sally Norton"... Look that title up here on UA-cam
55 here just found out this isn't just painful sex and dry vagina for years this that a young student dr looks says it's this go to gyn and yes it is great another stage of life for c women that's going to suck ..
Sad we get used to feeling crappy
My Dr told me that I had the worst case of LS he had ever seen. I was so swollen, itching and in a lot of pain. I also got a cream. I was diagnosed about 7 years ago. I still have flare ups and sometimes when I squat down to pick something up I have a shooting pain down there. It’s like an electric shock. Hurts like hell. I have had women problems my whole life, started with ovarian cysts, then endometriosis and fibroid tumors. I thought once I got my partial hysterectomy my life would finally be normal with no pain. It was for years till menopause then this happened. I’m so frustrated with my woman plumbing.
I have lichen and have experienced the sharp pain you described. It’s a bit reassuring to know I’m not the only one.
I’m 18 and I’ve been going through this , I freaking hate it. I have come up with ways to alleviate my symptoms but it’s still a pain 😔. I can’t believe I’m gonna have to deal w/ this forever but at least I’m not alone , wish you all the best ♥️ I’m going to try a super healthy diet w/ little to no yeast and less sugar so I can try and help my body from the inside...then I’m gonna use natural oils to help skin...and whatever my gynecologist recommends
Try IReliev It’s like dr ho you’ll love it for pain.
I was diagnosed with this last year at 25. It does get better trust me. I did the same thing you did with the diet and cut out meat as well. About 3 months later my day to day routine I don’t notice it at all.
look at oxalates and how they affect it
@@mov1ngforward thank you 🙏🏾
I feel your pain 😔I really hope you’re doing okay ♥️
Thanks for speaking out. I had a biopsy done yesterday and they think it's this. I've had this for years!!!
"Oxalates are ruining your health with Sally Norton"... Look that title up here on UA-cam
As i see from comments , many of you all are around 30+ yo beautiful humans, I am gonna be 19 years old in few days and i have the same issue :) And i have it for years too just as you all.Its really hard to having self confidence with this issue and being peace with yourself.I wasn't even confident enough to ever search for it after i get diagnosed and after years i am making a step to get in peace with it...
I'm 18 and in doing a nursing degree. I have complained about the pains and symptoms of this disease for years to many doctors and nurses but have always been ignored and overlooked. I was the one who had to do my own research and find the source of these issues which is when I stumbled across lichen sclerosis. Nurses and doctors must be educated, especially sexual health professionals as it also drastically increases the risk of getting STI's.
I felt.. Dirty... I thought God Was playing a trick on me! I knew it wasn't an STI because I wasn't in a realationship for like 10 years, I was about 63 when it first appeared, after a bout with Diverticulitis.. I was told that it was possible the Medication for that, may have woken up the LS. I was horrified. I am now almost 68 finally found the man of my dreams, and I have to deal with this darn disease ... Thankfully, he is extremely understanding. But, I can't stand it. The constant itch. the medication I was prescribed worked great the first Flare up, but now doesn't seem to be working as well. Its called NYSTATIN and Triancinolone Acetonide .. IT does wonders for the tears, but not much for the itch. anyway, I'm looking around for a new Dr. should I be going to a dermatologist or a Gynecologist? Gynecologist did the initial diagnosis, my Primary has been refilling the script. I worry about the skin down there. i'm not sure which way to turn I didn't like that Gynecologist office. ALL about the money and not my care.My name is Diane by the way. The J showing on my message is because it's my boyfriends computer. lol
It's best to call my team to schedule a consultation. The Stem Cell Lift Treatment can offer relief and hope. 310-273-3344
Ive had it for 20 years. Went Vegan 4 months ago after trying everything, and I have been symptom free for almost 3 and a half months now
Lorita Botes wow that is awesome
I went vegan for the same reason and it helped more than anything else but I still get flare ups
@@laurenm112 hi. what types of foods are you eating? plenty of veggies and fruits? thanks
im 11 and i have it
xoxXOXO l Yes a majority of my diet is fruits and veggies, I try to follow Dr Gregors daily dozen to make sure I get a variety of nutrients
THANKYOU!!!!!!!!
SO I DONT SUFFER ALONE!!!!!
you are a courageous woman having suffered for so long without diagnosis or trestment.
Thankyou for sharing your experience.
I've had it for about 10 -15 years. I have never used the topical creams. I've used emu oil everyday and a vitamin regime with Vitamin D and other supplements. I haven't had a flare up for years until recently when I stopped taking my vitamins on a regular. It was horrible. I started taking Vitamin D again and the flare up stopped that day. I also read that it is caused by a Vitamin D deficiency. This may not be everyones issue but it is mine. I looked into stem cell therapy but I haven't seen anyone with good results in my area. It's great that you found a doctor and he has good results. The Vitamin D and Emu Oil work great for me.
Tracy E I take D3 every day at a high level because I’m deficient. Because I’m deficient I take 10000i.u. My blood shows normal now but I still have this problem.
How did vitamin D help you? My doctor told me my vit d was extremely low and gave me 4 pills to take over 4 weeks. All symptoms dissappeared I thought it was a fluke...vit d helps? I was using a cream at the time a d thought it was due to the cream.
@@fountain855 The Vitamin D stops the itching and flare ups from LS. When I forget to take it get irritated. But once I go back to take my Vitamin D it stops.
@@rancar29 Continue to take it and prayfully it will stop the symptoms like it did for me.
Emu oil that’s not helping me do U have any other recommendations. Thank u 🙏🏻
I was diagnosed with LS. The doctor just chucked a prescription at me. No instructions, no help. I’m 76 and at last I may be able to see a specialist. I live in the UK. I have arthritis in my spine. It seems the attitudes to LS are ignorance and lack of compassion.
"Oxalates are ruining your health with Sally Norton"... Look that up here on UA-cam
Thank you so much for sharing your story. I've just been diagnosed with LS, after years of not knowing what was wrong with me and one doctor telling me there's nothing wrong with me it's in my head I'm so relieved to know this is real and other woman have it as well. Thanks again.
Lichen planus can be cured, I am a testimony I doubted at first then decided to give Dr iyaremoses on UA-cam channel a try I'm completely cured using his herbal medications.
I have had LS for 15 years. The medication creams stopped working. They actually made my skin come off. She is so right about everything with this disease especially flare ups.
Finally at 37 i went to the doctors as it was becoming unbareable. I was scratching till i bled. When i found out it sounds silly but i was so happy because she gave me the Clobetasol and it helped so much and finally i wasnt in pain or itching i nearly cried. So thankyou for sharing. I really hope you start feeling better
Thank you Traci. You’re very kind to share.
I have LS and it is impacting on my life in ways I never thought it could. I am 57 and was diagnosed at age 31. For years it was completely under control and I lived a completely normal life. For the past year, it has progressively become worse. ALL the steroid creams irritate the skin. Initially, they worked well but now within minutes of applying any of them (Dovate, Travocort, Dermovate.......) the intense burning causes me to wash it off immediately. So now, I use nothing and I am so desperate. It is affecting my sleep because it is so much worse at night. It makes me moody and very irritable because I dont feel well. I feel encouraged by watching videos like this. Thank you for sharing Traci. I dont feel so alone in trying to deal with this.
I know exactly how you feel, visit Dr Isibor on his UA-cam channel I was able to beat LP with his natural herbal supplements and cleanser it worked perfectly well
I heard benadryl at night might help with the itching.
I am with you on the creams. They literally eat my skin away. I start to feel the itching at night, and it's so horrid. I feel encouraged watching videos like this but when they are 2-3 years old it makes me wonder if this didn't work and we are back to the old drawing board. There is NOT enough being done to find a cure or even get this disease into remission. I feel so defeated and feel like this disease is taking over my life.
Hello. I have it too. I have embarked on a diet with no grains no dairy and very little sugar. It is helping.
I have a flair up every once In awhile...
I find these two creams very helpful..
Polysporin cream from local pharmacy..
Emuaid cream from a Health store... expensive but helps...
Hope it helps you ..
God bless
You are a very strong lady ❤❤❤
I am 13 and I got diagnosed like 4 months ago. My mom caught it and we went to the doctor and my “white patches” were black not white. I had to use creamed and steroids for 3 months. I also had a complication with the medicine and had to go to the gynecologist. I almost had to see a boy doctor and freaked out but then the doctor saw the and a nurse checked me out instead.
I hope you are doing ok
Poor kid,my deepest sympathy.
I am 69 and have had this all my life. I did not know what it was until I was going through the change. I feel like I am too old to go through stem cell and my insurance will not pay for out-of-state doctors. I cried when I listened to this story. I hope it continues to work for you.
Hi, how are you?
That is terrible, I can imagine your suffering.
I only got diagnosed recently after 42yrs!
My thoughts and love
Xo
if you are 69 you have Medicare. You can search for a policy that does handle out of state physicians. I use USAA and live in CA and Hawaii, treatment I'm looking for is in Florida. Plan for out of state doctors, good luck with your diagnosis
Thanks for sharing Traci. Please let us know how you are doing.
Thank you so much for sharing your story. You are so brave! I have had it for several years. I was finally diagnosed almost 2 years ago. I cried when I finally got a diagnoses. I was happy to know that I am not alone in this battle. There are so many of us. So many of us struggle for years before we even get a diagnoses. You will help so many that have always wondered what was wrong and will now have the courage to go and find out. God bless you! I hope you are better!
That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently
1 year ago I was diagnosed of LICHEN PLANUS and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including LICHEN PLANUS , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an LICHEN PLANUS herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from LICHEN PLANUS ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
Hay thé adresse of forum please
@@maymamayma300 his from west Africa
@@maymamayma300 +2348028753934
drjoshua.ighalo@gmail.com
I'm literally crying as I listen. Exactly what I'm going through n I don't think my partner understands, I'm frustrated sad. But seems hope is here. Thank you.
Thank you, Traci, for your confidence in speaking of this. I have had this problem for years but no doctor I mentioned it to was interested. I had a hysterectomy and the doctor was going to do a biopsy but because I was hemorrhaging she forgot about it. I’ve complained for years. Thank you for talking about some of the symptoms I have. I think mine may be more advanced and have a gyn appt next week.
There are triggers-hysterectomy is one of them.
Please insist on a biopsy, don’t be marginalized.
I have LS, but didn’t get it until I was going through menopause. My gynecologist said I had the worst case he had ever seen. My vagina was so swollen and red he couldn’t even enter me. He gave me cream, but with no side effects and told me to go home and put ice on it. With the cream it was 4 days on then 4 days off. I have flares, but not as often as I did before. I always had issues, I had endometriosis in my 20’s then in my 40’s I had fibroid tumors so I had a partial hysterectomy then finally was pain free till LS happened.
I was so confused when I was younger when I would go to the bathroom and see the different pigmentations on me. I would get those tiny paper cuts that would bleed and cause me so much pain. My mom new there was something wrong and for years my regular pediatrician would deny that anything was wrong and told my mother that I was just dry. Others would tell us to just use diaper rash cream or Vaseline. When I went into my first year of high school I noticed a new white patch on my lower back that kind of looked and felt like a burn scar. I showed my parents and they had no idea what it was so I got an appt to see a dermatologist. When I was there they told me it probably was nothing more than a strange rash but that they’d do a biopsy just in case. When we got the results I honestly had never heard Lichen sclerosis or Morphea. But, even though they told me that the spot on my back was SL and Morphea I never new that it was the cause of my chronic tearing, itching, and pain. When I went back a few weeks later to get the topical foam cream I was prescribed, the doctor asked if I had any of those symptoms and how long I’ve had them. When she told me that SL and Morphea was the reason I had been experiencing these for so long I felt so much better. I’m glad that I finally know what’s going on with my body. And even though I’m not completely comfortable with my body I’m glad I at least know what’s going on.
I'm so sorry u suffer with this as well. What kind of foam crm?. I'm just on clobetasol crm but it doesn't seem to help this flare up. Is there another crm or foam ?
I had a severe allergic reaction to pads a while back and everyone was convinced it was LS, but the biopsy showed otherwise. It triggered eczema that flares up when irritated- red, itchy, flakey, sometimes blisters...but it doesn't disfigure or increase cancer risks to my knowledge. I wouldn't wish it on anyone.
I can only imagine what it's like to live with LS. The damn itching alone is enough to drive a person insane.
I cut out all yeast and my itching stopped, I still suffer with LS but stopping that awful itch has made it more manageable and bearable. I’ve also cut out gluten and follow a celiac diet. The health authorities around the world need to provide money for more research in this debilitating disease 😔
You are extremely lucky. I cut out sugar 5 years ago. I do not eat bread or processed flour of any kind. I am a nutritionist so know what to eat and what not to eat. I bought a generator and make my own colloidal silver and apply that for the tares an bleeding. The cream I use also has colloidal silver in it so it soothes and heals only to get at least a one week of relief only to have it start all over again. I even tried just drinking vegetable juices that I juice myself for a 30 day period. No sugar, no salt, no yeast. Did nothing. So as I said you are very lucky that the itched stopped and it is manageable for you.
😢😢😢😢😢😢
Cut out oxalates too!
Thank you for sharing so openly and honestly. ❤ you are helping a lot of people
Lichen planus can be cured, I am a testimony I doubted at first then decided to give Dr iyaremoses on UA-cam channel a try I'm completely cured using his herbal medications.
My doctor in a very offhand way told me I had this disease, and a mild steroid cream would help. That was when I was in my thirties. I carried on getting more and more flare ups, the cream hardly helped, my husband and I had almost no intimate life, though I had remission with the births of my two girls, and my narriage fell apart. I am now in my seventies, and it still is the bane of my life. I get depressed, angry and frustrated, and I thought that that this was it, this was my life. I have only just learned exactly what LS is, that it is incurable, and I didn't go any further than than the first diagnosis, because I thought I had to cope regardless. I do hope that younger girls and women are more informed than I have been, and to Traci I can say I had exactly what she has suffered and I just gaped when I heard her story. The sad thing is that until today I did not realise there were others like her and me.
For anyone really struggling with this, I massively recommend Anthony Williams - Medical Medium. It’s a strict protocol, but it’s healing with food, & it helped me so much! I wish all people going through this the deepest relief and healing! ♥️
I was on a raw food diet for 6 months and it helped but never went away. I’m feeling it is tied to emotions/ trauma/ self worth. Out society and the powers that be/ social media / news is fucking with us all and messing with our minds in how we should be or do.
I have just been diagnosed with LS after trying to treat symptoms myself for over two months. While I’m thankful that this now has a name, I’m worried about the long term effects, I’m in pain and just starting treatments with steroid cream. When she said it felt like sitting in razor blades, I understood completely what she was saying, because that’s what it feels like, on top of the horrible, painful itching, that if you try to scratch, makes it 100 times worse, with bleeding no less. I’m scared because this is a progressive disease.
Feel so lucky to have found out early when my symptom were more mild
I was just diagnosed with this after being treated for a yeast infection for 4 months. Lucky my case is very mild.
@@stephaniecoffman5099 I kept going to the clinic and getting STI tests for my symptoms, eventually I spoke to my mum and she told me she was diagnosed with a skin condition down there a few years ago that can run in families but she couldn’t remember what it was called because she only had a bad flare up the one time, since then she’s not gone back to the doctor’s. I then told my doctor and he told me he thought it was lichen slcerosus and prescribed me steroid cream and I finally got better
Thank you for the reply! I’ve been using a steroid cream for a week now and have three more weeks left to use it! I have a follow up with my doctor after the month is up. Have you noticed it at all after stoping the steroid cream? I’ve been using the vani cream bar soap for feminine wash it’s fragrance free and dye free. Seems to not been giving me any problems so far.
@@stephaniecoffman5099 to be honest I had it really really mildly in the first place, most people would have brushed it off as nothing, I only really paid attention to it because my mum brought me up to be super cautious of my sexual health to I get even the smallest things investigated. And I’ve stopped using the cream and I’ve been mostly better since, the only with I have is tearing a little and I have to be careful about what tampons I use, but I try to avoid them. I do have a few rates that never completely healed but I think that because of sex I’ve not let it heal because I get to frustrated. but got to a point where the tears aren’t hurting me and the tears aren’t worse, I still have a couple light patches of skin but, litterally on such a small level. The tears are on a couple mm, and the white patchs of skin less than a cm
I'm a guy 18 I've been having sharp pains in my glans (tip) even when not urinating and there are white spots under the skin and it's become hard to urinate ,been to the doctor 6 time and a dermatologist and got skin taken to see if it was cancerous and it wasn't but it just doesn't make any sense gonna try the urologist next
This is exactly my story...even the steroid cream in my mid to late 20’s. I know how I feel and how it has affected my life. God bless you!
I was diagnosed with LS about 15 yrs ago around 50 yrs old, started using Clobetasol crm and continue using it 1x/ week..it works for me!! I remember my Dr saying that before Clobetasol was invented, there was a lot of suicides (1920, 30's, 40's) etc. due to the chronic itching & pain!!!!
I'm in so much pain the only thing that makes the pain go away is sleeping all day and night.
I hate to use the bathroom...baths only sooth the itch and pain for so long. My mental health is starting to decline I really just don't want to live anymore. I've been suffering since 2014 and have tried all kinds of medicine to help this awful demonic activity on my body. Pray for me all.
We are so sorry for what you are going through. There is hope with the Stem Cell Lift. You can call our office at 310-273-3344 to schedule a consultation. Relief is possible.
I had similar symptoms started using an estrogen ring it helped clear up everything maybe give it a try? Praying for you🙏🏻
I have had vulval Lichen Sclerosus for a number of years, and have had biopsies on , & off for 8 years. I had my last gynae visit last Tuesday, 26th Feb, where she did 5 vulval punch biopsies just in case the LS has developed into cancer. My mother had LS which turned into vulval cancer, which she sadly passed away from. I'm also being referred to a dermatologist. As I type this I'm waiting for the results of the biopsies...
How are you doing?
We are so sorry to hear about this and hope all is well. You can reach out to us for information about our stem cell lift procedure which offers relief for those who suffer from LS.
Just got diagnosed today. It's hard to take in. I don't know what to expect and I am scared. Not happy at all that anyone has to live like this but I am glad I'm not alone although I am feeling alone at this moment if that makes any sense at all.😭
I just got diagnosed too and finding it difficult to believe. What have you discovered since being diagnosed and is anything helping you? I've tried a dozen different oils and the steroid cream and nothing stops the pain and itching.
kingqueen237 I was diagnosed this past year. I am perimenopausal . I itch all the time and was given only strong steroids. I had a biopsy and there was no cancer. Going to get a second opinion. Not fun.
@@beckyw571 Have you tried the Borax yet ? I was reading that this is a bacteria/fungus that we have. I've been using Borax and it helps.
Go check out Nourishing transformation channel. She recommended sovereign silver. She has a website too.
JJ Sam No but I will ask about that at the health food store. I also watched nourishing transformation channel and she recommends sovereign silver. Thanks JJ
My heart breaks for her. I thank her tremendously for sharing her story.
I was diagnosed last year, however had symptoms roughly 6-7 years leading up to diagnosis. It was horrible, felt like I could dig my skin off. It even flared on top of my top part of my rear. It was when I went to a female obgyn, she brought up about doing a biopsy is when I got the diagnosis. I was grateful to have answers, but she didn't prescribe Clob ( I wasn't aware there was a stronger steroid cream at time until I visited another Obyn office). When I received diagnoses I was horrified, scared, depressed, scared, embarrassed, crying, felt alone feeling like a freak, what a crush to self esteem...etc... for a while, and feared cancer as well, I turned to research quickly, joining Facebook support groups, connecting with others who were diagnosed. They've been such lovely wonderful support and knowledgeable.
I was 54 years of age when diagnosed.
I had a full hysterectomy in 92, a partial thyroidectomy in 96. I don't know if hormonal plays a factor in this. The ladies and me discussed if thyroid may play a factor. Even if herpes may have a connection.
Last year my ears inside began to itch and flakes of skin would come out, not long after diagnosis, but I didn't think anything of relation. Then researched in group under name Linchens Sclerosus itching in ears, and there a few that had that. With taking care of my father on hospice at home for 3 years, I haven't had time to advocate much in getting to bottom of it. Recently had to take a visit to a ER clinic due to my ear hurting, feeling full, low grade fever, fluish like symptoms. I thought possibly Covid or two different issues. Covid negative.
Infection found on outer ear. My belief is I infected it from itching it so much, putting my fingers and digging. (Stupid I know.) I'm not sure it's Linchens, but something tells me it is. Will be seeing a ENT soon.
When I explained to ER clinic doctor I had Linchens, she knew what it was, it was a great feeling, maybe word is getting out. She stated to me, ( I bet you were told numerous times you had a yeast infection), I said yes and smiled. She knew...
Also roughly 5 years ago I developed a vestibular like issue, symptoms feels like I'm rocking on a boat every waking moment, along with a slew of other neurological debilitating symptoms. Which led me to a neurologist getting a series of tests done. My theory - is I often wonder if this is Linchens Sclerosus related. I understand there may not be any documented data on if any other patient has experienced similar, or if there's such a thing it could effect the neurological system. If this is rare, which means it's still in its learning curve, I wonder what will be found out later.
I'm thankful, appreciative and grateful I stumbled upon your channel Doctor, you're HERO. I'm very thankful you're advocating for LS
I extend my deepest sympathies, appreciation and love to all the LS family and for sharing your stories.
"Oxalates are ruining your health with Sally Norton"... Look that title up here on UA-cam
I am crying. I'm 37 and I've lived with vaginal burning every single day of my life. I find if I drink a bunch of water to dilute my urine it helps not hurt so much. Sometimes ice packs and pressure helps. It also makes me snappy when it's acting up. Sex has burned all my life. I was getting cuts on my vagina usually before my period for years but I've found coconut oil has helped a lot. I've been to so many doctors. I thought it was my bladder and kidneys because I had a lot of problems when I was a child but tests say otherwise. I've been tested for every STD over and over! I've never had an answer. I'm praying that this is it! If anyone else has ad this without white spots please let me know.
Hi,maybe you have lichen ruber planus. Its a bit different than sclerosus.I dont have white spots (only really small ones, a lot of doctors told me, that they cant see anything wrong). It was extremly difficult to get the right diagnose. I feel you. Hope you will find out!
@@marlchenm Thank you so much! I'll look into that
Part coconut oil and part shea butter is what I use. I placed two small jars in my bathroom, the other jar, I mixed with a pinch of turmeric powder. I gave up on OTCs as those creams didn’t help much, but the ones I made in my own kitchen did. So far the flare ups are chronic, but I can seem to predict the times of day they’re about to happen, and for the better part, the condition doesn’t keep me from accomplishing any daily activities that I’m able to do.
@@rayva1 Thank you! I'm going to try this. I haven't seen my gynecologist to discuss this yet. But he mentioned over the phone that nightly soaks with baking soda will help. I haven't done it nightly but do it when I can and it is very soothing.
I had it since a little girl but didn't know until my 30's I was just itchy all the time as a little girl. I realized something was different in my 30 and 40's. It got worse in my 50's and 60's. Now in my 70"s it has caused my skin to get even more sensitive. I had great sex most of my life but now I will not go horseback riding or long bike riding. Since then I have had many other illnesses that are most more annoying than this but one fear is it can turn to cancer.
Omg you hb survived this many years...wow...i feel little motivation to live...
I'M GOING THROUGH THIS NOW BUT I HAVEN'T GOTTEN A DR VISIT YET. I ALREADY HAVE MORPHEA & HAVE BEEN THROUGH A LIFE CHANGING THING I DIDN'T ASK FOR. I GOT IT RIGHT B4 COVID & 4 DR'S LATER I HAD BIOPSY ON MY BREAST CONFIRM THIS RARE IMMUNE DISORDER. IT'S ABSOLUTELY STRESS TRIGGERED TOTALLY FOR ME. I HOPE FOR A CURE BECAUSE THIS AWFUL THING NEEDS ANSWERS.
It made me want to cry.. everything she is saying, the shame , not wanting to be sexual with anyone. Pushing men away. I’m am 56 and was diagnosed some 20 years ago. Recently it flared up and my lady bits have taken a hit …. I was able to manage it up until recently. I have a lot of trauma and I think it has to do with emotions.
I got it when I was 7 and I am almost 13 and have had nothing that have made it better since and it just gets worse
We are so sorry to hear that. There is hope with stem cell treatment. Stay strong.
I was diagnosed with this a couple weeks ago. I totally understand how you are feeling. It's not fun that's for sure. I have the cream and waiting for all my tests get back
Thank you for the info I will fissure look into it. I hope it stays away for you! Mine has been coming and going. I don’t know if it’s what they say it is! It’s been a year and still a battle. I hope you have a great weekend !
Wow you are so young to have this disease. I feel bad for you as I have it too and I am 72
"Oxalates are ruining your health with Sally Norton"... Look that title up here on UA-cam
god bless you i have it too. thank you from England
It is interesting to see women with the same problem and different solutions. I was super scare to think this was a chronic disease. I was diagnosed 7 years ago, 3 years after I had a hysterectomy. After many doctors and misdiagnosis. My solution came using vaginal suppositories of Estriol. This is a natural hormone. I started with 3 per week and now using every day. Not a flare any more.
Hi how long have you been using the suppository?
@@YouthfulGlowBeautyRecipes almost four years
@@analiabertoni9793 Are you still using Estriol? Are you still not having flare ups!?
@@rubysohogirlI can say that I get to manage the condition, still using Estriol, walking every day, low sugar and starches, more fiber in the diet and don't get caught with negativity or toxic people.
I was just diagnosed 2weeks ago the itch and soreness was awful and intercourse with my husband stopped a few years ago the pesserios are nearly impossible to get in and now I understand the vulva can shrink I'm on ointments also I never heard of this before hopefully the treatment helps 🙌
My now 8 year old daughter had it at 2 years and it was something I thought was hereditary because daddy had some discoloration on his genitals as well. Lately she has been bleeding and complained about itchiness. Now I know what she has and have to start changing our diet.
What diet do they recommend changing to?
"Oxalates are ruining your health with Sally Norton"... Look that title up on UA-cam
@@rubysohogirl look at my comment
OMG thank you for sharing, I have been dealing with this on and off 😢. I am wanting to make a Apt ASAP
I love my bidet for cleansing the area!
Thank you!
Thank you for your experience. I was just diagnosed today.
I’m sorry you went through this. I was diagnosed this year. I’m old, so it isn’t as devastating as a young woman!!! So sorry! I hear there are laser treatments now.
Before I watch.
I was diagnosed recently, it transpires I have had this for 42 years.
It explains so much.
Husband called me fridge.
My life with it is hell!.
Severe alteration, more like closure.!
What can I do, what can I do. .
Love xo
Please look up Kefir on UA-cam and drink Kefir. It will heal you from the inside out.
Then you need a different husband. If only he had it for just one day, he would understand.
We are so sorry for your suffering. We can help- please email or call us if you'd like more information or have questions. info@nathannewmanmd.com or 310-273-3344
I understand 👍
thank you for your wonderful candid talk of this.. i have this too
yes i too stopped any sex at all.
Has anyone in this group tried Perrin Naturals? My Mom has had this for years and now its so bad she doesn't want to live. I'm doing and trying everything to help her pain and itching. I have it also but not that bad. Thanks for any help on getting my Mom relief.
I've used it whenever I have a flare up. I usually use it in addition to Clobetasol....Clobetisol in the morning, Perrins Complete at bedtime. Clears it up within a week or two!
I was just recently diagnosed with this at 25. It make me nervous and sad because I’m so young and want to have children one day, sex is painful, my case is very modified and I don’t notice it most days. It’s just more of an annoyance.
Im 31. And i have been having horrific symptoms since having my baby in july. The think its LS. I have to for biopsy
@@tiffani08tg stay positive! I have changed my diet completely to were most days now I hardly notice it! Cut or a lot of sugar and carbs. I have multiple vitamins I take daily as well such as fish oil, emu oil, probiotics.
@@stephaniecoffman5099 I also cut out sugar helps tons! And emu oil and prebiotics! Also only use cotton! Also for pads and tampons.
@@natalie.anna. yes! I ditched my tampons completely and just now use pads!
I'm sorry for her pain 😢 being a woman she wants to please her man sad hope she gets better
I have it too, but its spreadable bright white dots that eventually build together on my impact areas.
I’ve had these issues for 16 years . All of my older dr always told me that it was yeast. Yesterday I was told it could be Lichen sclerosis. Out of all the issues in this world I get 🫣 feels like my lady parts r getting ripped everymonth
This is so sad. I’ve got my first flare up of the complex virus in years …I used to have the irritability for months at a time. And yes it affects sex life. It is so sad this is not we’ll known. I had 8 professionals give me no answers!
Ps, I used to scrub it with green scratchy kitchen sponge because I thought it was something terrible!
I pride myself on being super clean down there, but it's coming off an auto-imune disorder, so confused with conflicting advice on what to eat and what not to eat, think a good idea to keep a food diary, and then a process of elimination. My Doctor advised me not to eat selfish, and red meat only eat once a week. I have had other symptoms for years, horrendous itchy rash, lumps on my back, thighs, inside arms, and my mouth swelled up, was taking benadryl almost every day, now on cetirizine antihistamine.
@@alohanow156 hi, after 7 months of sheer hell I have a diagnosis, this time, the right one, after 2 misdiagnosed,.... It was coming off undiagnosed diabetes type 2. As soon as I was started on metformin, and glyclazide within a week there was huge improvement, after 3 weeks it had gone. I'm just so very sorry for others with L. S.
@@cars3923 I started itching in August 2019, thought it was thrush, bought canestan, it got worse, saw Doctor who diagnosed lichen sclerosis, I must admit I thought he was right, given steroid cream, it got worse, itching, stinging, bleeding, swelling, I couldn't wear underwear, I couldn't sit down or stand up, I was suicidal. I didn't leave the house for 7 months except for hospital dermatology appointments and doctors. Finally after 7months and 3 misdiagnosis, dermatologist suggested blood glucose test, and there it was my results were through the roof, I had by this time white plaques on top of white plaques.
Started on metformin, glyclazide, my hair fell out. Most of it. Was it the stress, or the high blood sugars? No idea. But my undercarriage is now back to normal, after a few short weeks of being on the diabetes meds. Plaques have also gone, it's left my lady bits fragile, but I can get dressed and my hair is growing back in. I pray for all of you yet undiagnosed. Xx
@@cars3923 thank you. I did not overcome L. S. I was misdiagnosed. The horrendous rash was from the onset of diabetes. Be well. Xx
Back in high school in1994 I was told for years I had stds. The tests always came back back negative. At this time I had slept with one person. I ended up after years going to a specialist and had permanent damage. I had a vestibular vasectomy. It took moths before my skin was even ready for the surgery. I thank Godfrey finding my sweet surgeon who turned my life around.
Anyone tried aloe vera gel,preferably straight from the plant?
I’m pretty sure I have it. I use to have flare ups here and there. Now, Im post menopause and I have a full blown flare up. It’s so damn uncomfortable. Absolutely hate it. Sexual life is non existence . Going to see a doctor next week.
How did you get on at the GP, there is amazing support out there, good luck.
Forget stupid doctors. Go to earthclinic.com
Hope you have found relief. We are happy to answer any questions. You can call or email us anytime. 310-273-3344 or info@nathannewmanmd.com
Has anyone noticed that their L.S. started after using Vagisil Feminine Cleansing Wash or similar products?
When it ist started I thought it was thrush, used canestan cream and that did not help, used vagisil and it got worse, couldn't sit down, couldn't stand up, walking was agony, went to GP. Who diagnosed LS, and gave me betnovate also cetirizine ( antihistamine) and amytriptaline at night, used for neuropathy and antidepressant. Referred to dermatologist for biopsy, and ongoing care I guess.
If there isn’t a discharge accompanied with itching, burning, and dryness, then it isn’t a yeast infection.
I've had it about 20 yrs, but had medication only about 8ys. Steroid cream as and when needed, hormone tablet internally X2 a week, and Replens X1 wk. The itching has now gone from one small patch to several other parts front/back, but I get remission time. Sex - sometimes ok and sometimes not and bleed easily because of thinning linings. Caro
It's sad. This video is 5 years old. No new update on Traci (this video broke my heart because I feel exactly the way she does) but no news on whether the stem cells work. I went to Dr. Newman's page and most of the videos are old. I know there are tons of women out there that are trying all kinds of remedies for this. (Changing diet, different creams, homeopathic remedies, etc). I think more research needs to be done with stem cells, light therapy, etc. More clinical trials (and not just on the East Coast) more research, getting the word out there. I know there is no known cure, but there has to be a better treatment than steroids which eat away my already sensitive skin. I feel completely defeated as my anatomy is being "eaten away" and deformed, I cannot orgasm anymore, and on top of this I read that LS can close not only the vagina opening but also the urethra. This is scary as all hell. I feel like no one has really talked about this in years, and are suffering. :(
If you’re on the east coast “soho” I believe LIJ in new Hyde park does platelet rich plasma aka PRP therapy which is the next best therapy for LS. I’m sure this therapy is offered in Manhattan as well. The best therapy thus far is stem cell therapy. However, I heard great results with just PRP alone as well. Detox by eating lots of fruits, veggies, especially kale, avocados, liver, organic foods. This disease is coming from the inside of the body so just doing topical treatment is not enough. Also a good probiotic to heal the gut. Almost all inflammation in the body starts from the gut. Culturell probiotic is great because it has lactobacillus crispatus which is a the most prominent bacterium in a healthy vulva. Hope this helps!
I have same symptoms but was biopsy Ed and told lice on simplex cronicous
My daughter has Lichen planus. I'm sorry you have this awful, debilitating disease.
I’m starting to think that what I have is not yeast infection, because the treatment with ointments don’t help me, I remember I had it really bad and I did everything, and I was ok for a period of time and came back when I went to the gynecologist she tested me and sometimes it was negative, she gave me creams with estrógeno, antibiotics, and anti fungal creams, and I was young, but I have recurrent and I keep an anti itch cream most of the time.
I live near a center for Lichen Sclerosis.. it’s $3500 for a treatment. I don’t know if it even works or would stay working.
I went to a dermatologist and got a biopsy. I just got diagnosed with lichen sclerosus but the weird thing it's only on my arms and armpits. I saw online a diet for lichen sclerosus. Do you think that work up with the flare ups?
Hi there- we'd be happy to help get you scheduled for an appointment or answer questions! We cannot give any medical advice recommendations without seeing you as a patient.
This breaks my heart poor baby 8-12 etc suffering like that dam it...🙄
I have this skin condition but it’s on my back... I have none of the symptoms but it was tested via biopsy at the doctors and that’s what I have. Strange.
I have had it for. few years and wasn't diagnosed for 4 years because doctors said that It was just a rash
Thnk u sister I'm so crying to hear ur story same to same like me my husband leave me bcouse he think it's deases will transfer to him his bed think 😭😭😭😭😢😢😢😢 thnk you
How are you doing now?
do the white patches ever go away?
My friend has this. It’s awful for her
Thank you. Having my bloodwork soon. Maybe I am diabetic.
Did you find out if you are diabetic? I am applying black seed oil and thank God, it is working. I pray it continues to work.
After 7 months of sheer hell, itching, bleeding, swelling, etc, couldn't sit, or stand was finally correctly diagnosed with type 2 diabetes. Yes I was suicidal. After 1 week of metformin and glyclazide tablets, it was almost gone. Good luck everyone, get tested for diabetes to rule it out. Xx
Received my blood work, not diabetic. Had Tulip treatment by Dr. Coyle. Symptom free for one year. Going back this August 27, 2021 for a second treatment.
I have this and fucking hate this!!! Now going on 2 years. It has changed my life and I don't understand why I ended up with this confusing, painful, and scary skin illness.
You are not alone. I believe I have had this for about 7-8 years now and just got diagnosed 6 months ago. I am doing everything I can from changing my diet, to taking more supplements, I don't want to keep using the steroid cream because it eats my skin. This is an awful disease and there is NOT enough research, or talking about this. There needs to be more clinical trials, research, and finding treatments that actually work and not give false hope to women and men.
@@rubysohogirl yes! I first thought it was eczema, jock itch, herpes, psoriasis, allergies, and so much more. I was misdiagnosed so many times till I saw a dermatologist. I hate the steroid cream. It's messy, eats skin, and only works for a little bit. I wish there was something more for us! It's so painful and the most itchiness I've ever experienced. It was making me ruin my skin till I was diagnosed. Wish we could get a surgery or supplement to kill it. Thanks for sharing :( 😞 I'm sad knowing this lasts years..... wonder why we get it??? This literally happened to me out of nowhere....
@@Spartacus_Snakeplissken1 I am so sorry you are going thru this as well. We are not alone. Aside from the itch, burning, and pain now hearing and reading that the vagina opening can potentially close up and I wouldn't be able to make love to my husband is a real gut wrenching blow to me. More awareness needs to be out there, and there needs to be more research about this.
The less it's talked about and pushed under the rug the worse it will be for us. I am still semi young and trying to get a handle on the disease (learning what creams, how to apply) I know once I get older it's going to be harder to manage. I hope there is some break thru in the treatment of this.
"Oxalates are ruining your health with Sally Norton"... Look that title up here on UA-cam
How do we view Traci’s video 2 & 3 to follow her story?
Nathan Newman how was the treatment ineffective if the patient failed to comply with the treatment? Perhaps we can say that the discourses around gender and feminity made the patient feel that she would rather not use the treatment, due to the side effects. Which is well within her and anyone's right.