I live in Scotland and was diagnosed with this today. Looking back I feel there have been a few occasions where this could have been caught earlier. But today I was seen by a female doctor who has specific experience of this problem. She was in no doubt about the cause of my pain. Nothing I ever researched online gave me the name of this disorder. I am so grateful to the compassion of the doctor I saw today. I have a high tolerance to pain and discomfort, which might not be a good thing really. There’s no medals for putting up with pain. And it is rarely helpful to delay getting help. I am feeling such a relief to finding a treatment which can hopefully keep the worst of this under control. I was beginning to think that at 66 years old this was my future.

@michelehood8837

2 ай бұрын

I, too, was diagnosed with LS exactly a month ago. So far, the steroid cream I was prescribed is working. I go back to my OB GYN in a month for a biopsy. The fact that this disease could lead to cancer absolutely blows me away. My symptoms really just started a year ago - I just figured that the itching was a side-effect of low estrogen due to menopause. I wish I’d gone to the doctor sooner!

The mental stress that this disease puts you under is far worse than the itching

@lynellpudlz4326

Жыл бұрын

Agreed

@rubysohogirl

Жыл бұрын

I cannot agree more. I don't feel good about my body anymore. Especially "down south."

@ilenefardella9666

Жыл бұрын

You’re an amazing bra be woman, thanks for your story

@Ash-ro9ym

11 ай бұрын

Oh yes.

Dear lady, thank you for your courage in sharing. I am 76 and was diagnosed 2 yrs ago. The pain, loss, hopelessness, loneliness, has started to change since I have been finding people like you in my search for answers. I will be seeing a specialist at the end of the month and have real hope for the first time. And I agree that we must talk about this and become part of the solution. One voice can become many and many have the power to change. God bless you and help you find peace in your journey.

Been diagnosed with this in 2017 I believe. I was 67 at the time and had no idea what was going on. My gyn knew immediately and gave me a steroid to use which helped tremendously. My trigger however was sugar. Whenever I ate sugar, candy especially, I would start itching within minutes. When I do not eat it, I do not have the problem. Also, I had mild urinary incontinence for which I used what I call "pee pads". It helped the leaky urine but started to breakdown the skin and caused severe itching and burning shortly after taking the pad off. Took me a couple of years to realize the pads were causing the problem. Its not so bad now. . I use the steroid cream as I need to but it has settled down tremendously. In the beginning it was horrific but thank God I figured out the triggers and things are much better. I wish you continued success and hopefully one day there was be a real cure.

@captainpugwash7174

Жыл бұрын

What did you find out that triggers it please? I'm sick of the care in the UK.

@varishabharath3048

11 ай бұрын

I feel the same way my triggers was also sugar .. I'm diabetic and when my sugar was high it was absolutely unbearable but when my sugar is controlled it's absolutely fine... interesting...my gynae also immediately knew what it was, I had to Google because I'd never heard about it before

I was diagnosed with LS in my early 50's and started Clobetasol immediately, it helped so much!! Dr said that before Clobetasol was invented, it was common for women in the 1940s and earlier to commit suicide due to the constant pain & itching!

@kathyharmon2093

4 ай бұрын

It doesn’t work for me

@spooky-woof

29 күн бұрын

@@kathyharmon2093 have you tried gynatrof?? I recommend!

Just got diagnosed as well. Years of suffering in silence, thinking I was dirty or bad. Feeling so guilty for lack of intimacy. Diet seems to really trigger my flare ups and if I stick to a meat only diet I do a lot better.

@kathyharmon2093

4 ай бұрын

I have started a meat only diet and starting intermittent fasting

God bless her. It would've been helpful if she had discussed what treatments helped her.

@Amazinggrace1984

Жыл бұрын

Couldnt agree more...it wasnt helpful in that respect

@dorothybeveridge3133

Жыл бұрын

What was the treatment please. I’m suffering from vulva sclerosis. I am red , sore & can’t sit comfortably or wear underwear. Please please help me like you helped that lady . Please reply me asap. I’m suffering from anxiety from this debilitating disease . . 🙏

@janesullivan692

Жыл бұрын

Use a bidet/spray bottle and gently pat dry instead of wiping, never wash with soap, use petroleum jelly during the day to reduce friction, sleep without underwear, only wear breathable cotton underwear, avoid tight, constricting pants, talj to your doctor, who may prescribe clobetasol, a steroid that really helps if used correctly.

@MSP2104

Жыл бұрын

Exactly. Happy for her, but about 10% of people suffer from LS, it is not that rare at all, but mainly women suffer from it and bc medicine has always been focused on men, there is no cure as yet. If this woman has a cure, she should say out loud what it consists of.

@Snowmanatee

8 ай бұрын

Just diagnosed and there still is no cure….although if you search KZread there are some who have shared stories of remission and how they did it. But no guarantee! The treatment is doctor prescribed “topical steroids”. You MUST be under ongoing physician care for its use. It is WORTH it! Hope this information helps others.

One thing that needs to be added is this…at the time I was diagnosed, by biopsy, I was doing transcription in the clinic where I got my care. I went to the doctor’s office and pulled out his dermatology reference book. It said there that LS, in the pelvic area, usually is in a figure eight area. It includes the rectal area also. Where I live now, a nurse at my doctor’s office told me that her mother had it on her breast.

Thanks so much for sharing. It's a horrible disease. It's horrible to be standing there and having intense itching in front of others.

I have had it for 1.5 years. I was diagnosed last week. It is a horrible pain for sure.

I was diagnosed today. First, I don't think I have it down stairs YET. I had brain surgery last year and about the same time, I noticed a rash on my wrist that wouldn't go away. Then I noticed the same spots ( blisters) on my ankle. I finally went to the dermatologist, and they took a biopsy. I am so tired of Doctor's. Ugh‼️

I have this condition but I am so incredibly lucky to have treatment that helps. I had to deal with no treatment for only a few months. I literally cannot imagine living without treatment for even just a year, so decades is absolutely crazy.... I honestly don't get how she's done it because it was horrible for me.... wow

@thisbishmel

2 жыл бұрын

I was misdiagnosed when I was 17 and am now 42 at age 36 I finally found out it was lichen sclerosis and had 6 surgeries in 2 years. including a partial valvectomy . They finally believed me when I had told them the whole time I didn't have what they said I had. Only because I I a flare up for a whole year nothing they did worked so sent me to 3 specialists finally one said I know what this is . I had been so long without treatment that I had no vaginal lips and half of my vulva was ruined. I tried to sue but by the time they gave me all my paperwork and everything I needed the 2 year statuet of li.itations was up. Can u believe thT???

@WayShowers

Жыл бұрын

What treatment are you using? I’ve tried both the creams which are excruciating and they can cause cancer too. It is awful!!

@Amazinggrace1984

Жыл бұрын

What helped you?

@ddhqj2023

Жыл бұрын

@@Amazinggrace1984 Try a hydrocortisone cream. Works for me the minute I feel a flair up starting.

@DavidSmith3750

8 ай бұрын

Warm soak 1 tbsp alum powder 10 min. Then pat dry use neosporen with lidocaine helps pain. Buy a bidet use cotton hankies Helps

I've only JUST been diagnosed today. I have Idiopathic Intracranial Hypertension which is very rare and now THIS! I am completely overwhelmed

@charlottestallion7513

2 жыл бұрын

I know exactly how you feel, visit Dr Isibor on his KZread channel I was able to beat LP with his natural herbal supplements and cleanser it worked perfectly well

@petlova1260

2 жыл бұрын

I have no idea what idiopathic intracranial Nate cranny above what you’re going through but I did notice in the reading of these replies that Miranda above has found that organic coconut oil helps if you can’t have access to the creams that are steroid topical

@ChickadeeBird

Жыл бұрын

wow i have both conditions and hyperparathyroidism

@juliemcdonald1245

Жыл бұрын

@@ChickadeeBird I had thyroid cancer.....total thyroidectomy and then all the other shite hit the fan. I'm so sorry you're going through this.

My wife has been dealing with it for 4 years now, i hate that there isnt anything i can do to help. She has the creams they give to help the itching and white patches, but i hate that she has to go through this. It all started after our 3 kid was born. It just crazy how it was all of a sudden.

@Katie-qg7xz

Жыл бұрын

The fact you are there for her is everything. It is tangible, lasting, and appreciated. -an appreciative wife.

@JeepTrailsandBarbells

Жыл бұрын

@Katie she is my everything. I'll be there for her until my last breath. We have been married for 14 years, we only knew each other for 3 weeks then got married. And thank you for being kind, if you also have this issue, I am truly sorry; it is a terrible thing to have. And I hope you don't have to deal with the symptoms often, if at all. It is hard for me to watch her be in pain. I hate it, and I'm sure your husband would trade places with you as I would with my wife if i could.

@Katie-qg7xz

Жыл бұрын

@@JeepTrailsandBarbells Jeston, I am so sorry I just saw your comment. I absolutely love your love for your wife. My husband and I dated two weeks and we got married. Our relationship is so precious and has weathered a bunch. We've been married 18 years. I wish everyone had this. I thought the other day if I could be well and not have my husband, would I? A resounding no!! I have the most difficult thing and so do you. Your wife is incredibly blessed!

@zenrockgardens

Жыл бұрын

I never even heard of such a disease until a Dr. Veronikis in St. Louis told me I had it and what it was. He helped develop a treatment called Mona Lisa. It's a vaginal laser treatment and it worked immediately. Stopped the itching, the growth, and the horror. I saw him every six months the first year and now annually for treatments but really more to have someone checking it. I am prescribed Clobetesol creme for the external areas and an Estrogen cream for the internal. He says I will take that forever probably. But I am not very good at keeping up with the creams. I am looking into a diet now as it is an autoimmune response. I hope your wife finds a solution.

@samanthathompson9812

8 ай бұрын

Someone needs to do a large-scale study where they compare when it starts or flares and see what the commonalities are.

My young physician in Bend, Oregon asked me what LS is like. I told her if I couldn’t get my medicine, I would be praying that I died. It’s hell without the medicine. I was taking Clobetasol for years then it got too expensive it was over $400.00 for one tube. My doctor put me on another less potent one and thankfully it keep it under control.

You are so brave! I needed to hear this, I will be calling my MD in the morning. Thank you so much 🙏

God Bless You! I was just diagnosed with LS. I hope the treatments work!

I was diagnosed in 2018 after 20 years of every doctor saying idk or it’s in your head. I finally had a doctor who took one look and said oh i know what you have . You have ls but let’s do a biopsy to confirm. Sure enough it was. Sadly many many doctors have no idea what it is.

I just had a biopsy yesterday and they think that this is it. I've been struggling with this years. I finally found a Dr that actually decided it needed biopsies. Thanks for speaking out!!

@ddhqj2023

Жыл бұрын

Did they ever talk to you about using hydrocortisone cream? Works wonders for stopping the itching the moment you begin to feel a flair up? Can be bought over the counter to test it for yourself.

@lillyrocks2011

9 ай бұрын

Hi! It's a relief to finally get to know what is the real name,the real diagnosis. I'd like to know where did you go to get the diagnosis? And what's the speciality? Thanks.

Carrie thank you so much I really have been going through a hard time as well but not for 19 years maybe one year I kept on treating myself for yeast infection The nurse practitioner just said” you’re scratching down there.?” made fun of me. I can’t explain how I felt. I felt so dirty and embarrassed Just telling the truth even telling my mental health and sexual assault worker whom I’ve grown very close to. Long story short I have gone to a specialist who diagnosed me with LS. The only thing about the two creams is they are known to thin your skin I The doc said I can use it 1x per day. Btw I’m 61 and I’m so sorry that you had to go through this. I’m so thrilled that you have a supportive husband who stands by you as mine does. Take care sweetly.

I've had HSV2 for 9 years (I'm 41). And LS just began a year ago. Since HSV2 and the emotional impact I've dealt with in accepting that and not letting it define me, the new LS diagnosis is disappointing but I've developed a thick skin(so to speak). LS isn't as traumatizing. Its life. Roll with the punches and keep moving forward. Would love to hear about a cure for either diagnosis. But I'm still beautiful and my husband is lucky to have me, my faults and all. I'm lucky to have him, too.

@rubysohogirl

Жыл бұрын

I hear you M. I have had this (Only finally diagonsed 6 months ago) with this. Some days are better than others, but there are days I do feel like I want to give up when the itching, burning, and pain become too intense. I do not believe there have been enough clinical trials, research or talk about LS. I wish more people were aware of it, and that there was more hope than steroid creams!

@just_peachy6582

Жыл бұрын

@@rubysohogirl I agree they need to do more clinical trials, and for us people who don’t have health insurance, I find myself in the bathtub a lot

@dalebaker5030

Жыл бұрын

@@rubysohogirl i just tried writing to you my own experience but i believe youtube has a 500 letter max reply. Can i just say first of all i'm sorry to hear this, if there's any positive my end to say to you it's at least you know what you have. I'll try be brief as i can. I'm 9 months down the line and seeing pictures of this disease; i believe i could have it or some kind of HPV are my two worst case scenarios. I was told i had syphillis or chlamydia and put on doxycycline. A month later my urine was on fire, My gp gave me more antibiotics with no examination. it went but i had spots all over i believe still from my first interaction. I self treated with hydrocortisone for 10 days and had a 90% clear up but still bumps all over. I had about 4 months of relative happiness just a disinfectant smell from urine for a few weeks after antibiotics. Now in the last week the spots that had 90% gone are back. Urinating is extremely painful and smells horrendous. I'm sorry to say this too but i can't live my life with this continually coming back and not knowing what is.

@Amazinggrace1984

Жыл бұрын

@@rubysohogirl I have heard pure Emu oil on the area can be very helpful..

@kathyharmon2093

4 ай бұрын

@@dalebaker5030mine is extremely bad, started an all meat diet and intermittent fasting to get it under control, best wishes

I’m fighting with this right now and I’m just 28 very uncomfortable makes me irritated.

@rubysohogirl

Жыл бұрын

I am so sorry you are dealing with this. :(

@mjallisa

Ай бұрын

I just recently got diagnosed and I’m 34 I’ve been dealing with it for about three years now and they kept telling me that I have bacterial vaginosis. Then I went to a specialist and then they said that I had LS the whole time I used to be so miserable at work. But I found ways to make it better to get through the day, but it Hass to be constantly treated.

Yeah I developed this rare disease about 2 years ago. Same thing; the first time I became intimate with a new partner was the night it started to develop, and my symptoms were the same the following morning. Only because I have been studying anatomy in medical school was I able to figure out what was going on with me. Doctors have been mostly useless or slow-to-response.. so I took matters into my own hands and got myself an illegal prescription for clobetasol (thanks pharmacology). Now after about 2 months of use, I am itch-free and pain-free, and the general appearance of my thinned skin is reduced. It’s so sad that this condition is not taken more seriously; causing people like me to resort to illegal/dangerous measures to fix the problem. I will also be scheduling my own biopsy with a lab as there is about a 1% chance that the damage caused by the itching and scratching has created cancerous lesions.

@aliciaoyz

2 жыл бұрын

hey, i'm experiencing similar symptoms, but i'm not sure if it is Lichen Sclerosus, is doing a biopsy the only way to confirm? should i try to use some cream first? I found this on amazon, Dr. Wolff`s Vagisan Protective Ointment | Anti Chafing Cream for Intimate Area. because of the itchy and pain i can't sleep at night for weeks now. any advice?

@petlova1260

2 жыл бұрын

@@aliciaoyz please get checked by a specialist they can give you the cream and they can diagnose it most of the time I think my doctor did! Good luck with it hon I’d be careful using other creams that might hurt you. I didn’t know about the cancer check so I’m going to ask about it I’m afraid but I’m going to do it.

@lisabroestaff7133

2 жыл бұрын

@Emily Spinks I was just diagnosed with LS today. My doctor prescribed the corticosteroid cream but there is presently a problem with the manufacturer of the product I was prescribed, so now I have to continue to suffer until I can get a different prescription. The itching comes and goes, but for me the worst symptom is the tearing of the skin in the perineum and labial folds when wiping. I have been dealing with this pain for nearly a year because I just assumed it was a symptom of menopause. So glad I finally talked to my doctor.

@captainpugwash7174

Жыл бұрын

I've had 3 biopsies leading to 2 operations to cut legions out. Sometimes I use to want to get scissors and cut my private parts off. I use the cream when needed but my partner died aged 42 and I don't have the confidence to even go on a date.

@mamabear9380

Жыл бұрын

Same thing happened to me, I was intimate with someone new 2 times, I am in menopause, had bv all the burning from that went away ended up going to 4 obgyns all said lichen but told to use clobetasol things went away for a month got put on amoxicillin an all the burning started again. I finally found a Dr not in my town that told me to stop my estradiol an use the clobetasol cream for 6 weeks an come back, she also is ruling any all STDs as well just because this came on after intercourse. Some Drs don't truly want to help you but there are Drs that will help. I saw a 5th Dr who is helping.. this disease is awful when you have burning an pain and the medicine isn't working the best

Thank you for sharing your story. Hugs.

Thank you I was just diagnosed and I'm so upset afraid and embarrassed.Thank you for this video

I was diagnosed a few years ago and see a specialist here in Australia he’s incredible and I thank God for my specialist ❤

@renastein9892

2 ай бұрын

Has this specialist cured you or are you on medication to "manage the symptoms"? I know what you're going through. I had LS for 10 years and it almost drove me crazy, but thankfully for two years now I'm totally free of it. When I changed my diet it was for other reasons, but within less than a month into it I noticed the terrible burning itch had completely disappeared. About two months ago I felt the familiar tingling itch return, and suspected it was because I was eating a tiny amount of fresh herbs from my garden. I stopped doing that and those symptoms vanished and have not returned. All the best, and I hope your doctor can cure you.

I was just diagnosed with this a month ago, it’s horrible

Menopause caused years of itching, eventually diagnosed with this problem. Use a steroid cream and it cleared up, but do have to reapply now and again. Use almond oil to wipe myself before a shower, that way a gentle bodywash still cleans you, but does not strip your skin. Caro

I just had a biopsy today. I had a spot that hasn’t healed since last summer. No creams, or pills helped. It’s so raw and itchy. I believe it’s either cancer or this… but I’m keeping this to myself from my doctor. I’ve cried a lot and I’m just so done. It hurts to pee, it hurts to wipe, it hurts to wash. It hasn’t spread or does my spouse have it… it’s so depressing. I’ll have answers in 3 days. I’ll come back and comment if it’s confirmed. I never knew this existed!

@ddhqj2023

Жыл бұрын

Try using hydrocortisone cream, available over the counter from the pharmacy. Works for me. The minute you feel a hint of a flair up.

@livelovedaydream

10 ай бұрын

Did you find out?

My doc new IMMEDIATELY what it was….THANK GOD I’ve been able to control mine💕💕👍

@BankRollBritt

6 ай бұрын

How’s intimacy?

Beef, salt and water diet with intermittent fasting and use Perrin complete cream to put in remission

Women need to know about this disease. Luckily I was older when I got this and it must be a mild case because using Clobetasol ointment on a once a week basis has helped and kept mine in control. Good luck to you.

I have also had this for almost 19 years now and let me tell you the itching is not the worst part. Because the white patches of skin are so thin, when you do inevitably given to itching it, the skin tears so easily. Not to be graphic, but it's like one moment I'm doing okay and the next I have blood running down my legs. Not to mention how if it goes untreated your skin fuses together. I don't love this look for me Hahaha

@rubysohogirl

Жыл бұрын

I can totally understand Dorty. I try so hard not to itch, and even when I do scratch there is NO relief. People have NO idea what this feels like or does to you mentally (but also physically) until it happens to them.

@scottiewadlington4577

Жыл бұрын

What kind of treatment do you use?

I have this condition here in the uk. Theres no help, basically told deal with it, it will never go. Got cream but it doesn't help.

@kathyharmon2093

4 ай бұрын

All beef diet and intermittent fasting to put in remission

I dont think this disease is all that rare...it has just been talked about less.Research has shown me Vaseline on the areas is good..protective barrier and pure Emu oil...Hope it helps

Thanks for sharing♥️

Had it for 10+ years, had 2 surgeries to try to open up the area, used medical dilation devices to try to open up the area as skin has atrophied no longer have labia, or a clitoris its all shrunk back Fortunately I have an understanding husband as we can no longer have intercourse currently having a flare up red sore bleeding and itching I could and do cry it makes my life a misery

Its not that rare. A lot of women get it but it is not diagnosed or talked about. My G P did not know what it was and kept giving me thrush cream. It was 15 years before I insisted that I be sent to a hospital. After a biopsy it was identified and Lichen Sclerosus.

I'd like to know what the treatment is! I was diagnosed with LS 3 years ago and no one I've seen has given me anything. I'm miserable, it's costing me my marriage, and my mental health. Some days I'd like to just end it all. I have this all over my body!

@roseanneworfolk4680

Жыл бұрын

I'm so sorry you're going through this, maybe try a new doctor. I also seen a few videos suggesting a few herbal remedies that you can try in the meantime.

@ddhqj2023

Жыл бұрын

Try hydrocortisone cream. Has worked for me for years. I don't use it constantly, only when I feel a hint of a flair up starting.

@daj4740

11 ай бұрын

I was diagnosed with LS a couple of months ago. The itching was debilitating and it was painful to sit down or wear underwear. The GYN knew what it was with the white skin etc and prescribed clobetasol ointment , 2 times/day for 6 weeks. It took away the pain and itching! Now I have tapered to once/day, then it will be 3 times/wk. I will have to be on a maintenance dose and visits every 6 months to the GYN for the rest of my life for close monitoring.

@valerierdh9329

9 ай бұрын

Ask for a Rx of Clobetasol ointment ASAP!! Use it every day!!

@kathyharmon2093

4 ай бұрын

All meat diet and intermittent fasting to put it in remission

I’d rather cut off my vagina than live like this the itching is insane if you don’t itch it’s torture and if you do it hurts so bad after and the embarrassment of having to tell your bf. The pain is so bad

@ddhqj2023

Жыл бұрын

A woman in Canada requested assisted dying a few years ago, because her symptoms were constant and extreme. My first flair up was the worst, lasted a couple weeks until the doctor gave me hydrocortisone cream. Now just a dab of the weaker over the counter product when a flair up is trying to start, calms the tissue and it passes. Hope you've figured out something that helps you.

Its not a rare disease. Unfortunately many women are having it but are sent home by their doctor saying that it is because of age and hormones .....and that you have to accept it ...

My dermatologist gave me elidel cream and I mix that with Vasoline, but I’m tired of using the creams they’re only temporary

What is the treatment for this? I just got diagnosed but my PCP is not treating me, she just gave me hydrocortisone for it, and it helped for a while, but now it is getting worse. I wish I had better treatment options. Can anyone suggest some to me?

@susanjohnson6860

7 ай бұрын

Clobetasol cream is the only med that I know of that treats LS specifically.

This disorder is hard to live with and I don't think it's all that rare. I've had this for awhile (I'm about 15 years post menopause) , but only recently diagnosed by an OB-GYN, and there have been good days and bad -- sometimes nothing hurts or itches, some days I can barely walk with this. It flares unpredictably. I'd like to know what products or treatments are helpful?

@bjrlmh52

Жыл бұрын

I found help with a product called Creme Complete by Perrins Natural. Stopped the itch, healed the skin.

@kathyharmon2093

4 ай бұрын

Only beef salt and water diet with intermittent fasting and Perrin complete cream to put in remission

LS is the devil, from which there is no escape. It is more horrible than this lovely woman could put into words, thus the tears.

@petlova1260

2 жыл бұрын

Look at the above comment with the doc. There is hope! Don’t give up.

Have this to its horrible been dealing with it about 10yrs, my anal area is the worsed, my man says im smaller in my v :( so sick of it gets you down thats for sure!

Y do I seem to be the one with burning n little itching?

I,ve had this for 2 years and use Emauid cream and it,s natural and resolves the pain and itching very fast. The red box is the strongest. Works like a miracle!❤😊

We have helped many people overcome Lichen Sclerosus naturally. Stay positive!

@petlova1260

2 жыл бұрын

How. I’m in Ontario Canada where are you and thank you for the hope

@petlova1260

2 жыл бұрын

I am asking for help Dr Yu but it is hard to find information on this and I am now bleeding I believe my skin is thinning with the steroid cream I’m waiting to see another specialist. Please take time to give us a little information where we could look ourselves for help how can we stay positive if the condition is getting worse please help us thank you

@rubysohogirl

Жыл бұрын

Dr. Yu. You stated 6 months ago that you have helped many people overcome LS. What do you mean overcome? They are now in remission? They are free of it? I don't think there has been enough research on this disease and that creams/ointments are still the gold standard which is not helpful all the time.

@chellebelle1970

Жыл бұрын

do i put the steroid cream on the outer labia or inner or both.

@rubysohogirl

Жыл бұрын

@@chellebelle1970 I would make sure that you put it on every place there is a whitening of the skin. I had to have my husband help me because I can't see. Just be careful not to get the cream into the urethra.

Can you please tell me what the treatment is? I need treatment 😢

God this disease sucks. Gotta have surgery to remove some of the scar tissue. Bits got reabsorbed. 0/10 do not recommend.

Clobetasol is the first line treatment but long term steroid use is something not everybody can do.

I had two rare diseases...awful

@samanthathompson9812

8 ай бұрын

Same

My doctor says they're not positive. This is autoimmune

Vows finally broke

So what's the cure????

I wished the drugs the doctors give for LS would have helped. Most woman continue suffering even with drugs and on top of that get side effects from it. I wished since and pharma would have done a better job!

Is it always intense itching & pain??? Or is it progressive???

❤❤❤❤❤❤❤

Is it sexually transmitted?

@dreamgirl-rx2hx

7 ай бұрын

As i hb research on google its doesnt

@kathyharmon2093

4 ай бұрын

No it’s NOT sexually transmitted

Maybe try carnivore diet

It's not rare ...

Why is this such a big deal? I have it, I put a cream on it and it goes away. Next time it comes same thing. It doesn’t need to be a big drama spanning many years of suffering. Seems like the medical profession has let her down..

@aisaac1919

2 жыл бұрын

Its different for different people. You are one of the lucky ones. Not everyone is as lucky as you.

@TheSierralj

2 жыл бұрын

@@aisaac1919 it is a big deal every single woman who’s dealing with this has different reactions it’s like a nightmare from hell burning f tearing and the list goes on. I was diagnosed almost two years ago in my life has been a living hell.

@nurse580

2 жыл бұрын

My sister has had multiple creams from Drs but nothing helps for long. You obviously have it quite mildly.

@petlova1260

2 жыл бұрын

As you use the steroid steroid creams your skin can thin out I don’t mean to scare people this could even happen do you dear I am now having lesions just trying to dry my skin the doctor said I could use the steroid cream every day I used it every two days and it’s only been about a month since this new cream I’m waiting to see a gynaecologist I suffer every evening I feel really bad for all the others were suffering with this we’re not trying to make a big deal of it it’s reality for people hon I hope you learn something from this and be careful yourself

@trinitycombs3633

Жыл бұрын

Imagine thinking everyone has the same symptoms before and after medication

Save lives? It's awful, but not life threatening

@rubysohogirl

Жыл бұрын

It can be if you are one of the 1-3% that gets vulvar cancer and it gets misdiagnosed.

@evaeilea

Жыл бұрын

Some people go years without being diagnosed, it can ruin your life, you can get called crazy by doctors saying it’s in your head, some women only discover they have LS when they are diagnosed with vulvar cancer… it’s mostly not deadly but it does ruin your life

@ddhqj2023

Жыл бұрын

A woman in Canada was granted assisted dying because her LS was so extreme and had been going on for years. In that sense, yes, it can be life threatening.

@spamgarbage6999

10 ай бұрын

Go look up pictures babes

@brendarivera4437

10 ай бұрын

Its pre-cancerous, when the tearing progresses without treatment, google it💡. It also takes a huge toll on your quality of life and mental health.