Dr. Babb, I can't thank you enough for this. I only WISH that Drs would take the time to check out WHY patients who present to them with horrible itch and obviously in pain, and not just gaslight them by pushing them off and telling them they have a yeast infection. I'm So angry. For well over a year, I was told over and over again that I had a yeast infection and my Dr. wouldn't even take a LOOK, and told me that wasn't "her area". FINALLY, after over a year, of horrible symptoms, I arrived at her office, in near hysterics. I begged her to look into Lichen Schlerosus (because by that time I had diagnosed myself) She pulled out her phone and I guess looked it up and immediately prescribed a small amount (small tube) of Clobetasol until I could get to my gyno. (It took me 4 months to get an appointment with a GYN).. I guess after going through this - I wish Drs. would just do checks for Lichen's Scherlosus with everyone who walked through the door with uncontrollable itch. IT should NEVER EVER take over a year to get diagnosed and start being treated. For many of us there is just so much horrible suffering that comes with this disease. More needs to be done. TY again Dr. Babb.
Thank you Dr. Babb! I’ve had LS since I was a little girl. I’m 57 now. You made me cry. You’re the first person I have heard talk about this that truly understands the psychological aspect of this awful disease. Thank you.
Recently diagnosed with this condition. This week had surgery for labial/vaginal adhesion excision to allow me to pee. For over a month it had gotten to the point I could not pee comfortably. Will be using the recommended ointment also and ice treatment as was as a vaginal estrogen cream. All of this is new. I've suffered since last November, and had been treated for a UTI. Then things got very bad and underwent the surgery this past week. A catheter was inserted to help me pee. I'm now peeing on my own. This is a devastating condition. Thankful I found the right uro/gynocological doctors that are treating this.
Very good video. Wish you were my doctor; had a wonderful lady and she passed away. I was itching so did a mirror exam and noticed a pearly white patch that had suddenly surfaced. My doctor removed it and it came back as squamous cell carcinoma. She said it shouldn't itch any more, but it did, horribly. She diagnosed me with LS by sight -- she saw mall blood blisters and a wasp-shaped patch of pale skin. My biopsy was negative. We tried different shower gels, laundry soaps etc. but nothing helped. Finally she put me on Synalar and it was fair, I think just rubbing something there helped. I cannot get into a tub because I had a stroke and am partly paralyzed. My fiance has died so I am not sexually active right now, but who's to say what the future brings. My itching is still present, more toward the back (perineum?) than the front. It's nowhere near the clitoris. It is definitely a mental disease; sometimes I feel so miserable I could just about lay down and die.
I understand! I too suffer with this condition! I do the best I can with the Clobetasol. Let me mention that I am 57 and have had no romance in several years. I am ok with that because I feel like it would be torture. I pray for all of us that have it!!
Thank you so much for this valuable information. I have had LS, for 10 years and have suffered immense pain that comes with the condition. I had biopsies done which confirmed it. I feel as though, I was lead to think it was a minor condition, so I have not really talked about it and suffered in silence. Here in the UK, they don't follow up at the gynaecologist anymore, as they previously did as a yearly check. I have only been given the ointment. I am so glad you highlighted the mental impact, and fusions, which I have. I also did not know that in remission you should still use the ointment once a week, which I shall now do. Once again thank you for all this information.
Thank you very much for mentioning the psychological/sexual trauma and impact on our self perception. Your words are very helpful and comforting!!! It feels exactly as you mention it! But the medical persons don‘t adress this and we feel left alone and scared. Thank you for being so empathic! It helps so much!
Just got diagnosed yesterday. What a relief to know it wasn’t just me staring into the future of getting older? I have never really had itchiness mine went straight to painful, like sitting on knives.
Than you Dr Babb, I am recently diagnosed at 61, typically over treated for yeast infections until a different Dr, female, took a swab and no yeast! LS. My previous Obgyn retired and then we moved so it's difficult finding new health carers you are comfortable with. And you are so right about treating the whole person because I am struggling with the whole thing, as well as already dealing with grief from the loss of my mum and my 2 dogs within 6 weeks earlier this year....but have found Jaclyn and Lost Labia Chronicles, so have support there but I am in Australia. I also have Hashimotos and IBS, so just another thing to deal with......😏
Wow, that’s a lot to deal with! Thank you so much for reaching out - I’m happy to help out at any way that I can, whether that’s providing information or potentially connecting you with providers in Australia.
@@dr.coreybabb thanks so much, would appreciate any information on providers in Queensland, I have recently found out about Dr Gayle Fischer, but she is in Victoria.
@@dr.coreybabb Thank you for replying, unfortunately no NSW is still too far, I live about 4 hour drive from Brisbane in Queensland and NSW is the next state. But thank you.
It took 20 years to get properly dx! It took one doctor to look at me and say I know what you have but let’s do a biopsy!! I wanted to cry with relief!! Thank you for this video I wish more doctors understood this!
You’re amazing, Dr. Babb! Thank you for being passionate about a disease many are suffering with and not always getting the right help! I wish you were here in Toronto, ❤️❤️❤️
Thank you for your comprehensive discussion surrounding this topic. I've been biopsy diagnosing LS for years, found quite a few surprise cases in my early years, women with chronic vulvar pruritis that I thought maybe related to products they were using. But per biopsy, LS. I typically treat to get them out of symptomatic flare, then one to two times a week I found the steroids worked much better after a 10 minute warm water soak, and rubbing the steroid ointment into the affected area for at least 90 seconds. Your discussion was very reassuring, Thank you again!
Fantastic video. Just had a biopsy anticipating a diagnosis. I am lucky to have a GP that is prepared to investigate at my suggestion. I would bet my house on a positive diagnosis of LS after several weeks of failed treatment for fungal, bacterial etc. My GP was on the ball because of her concern about the constant reappearance of white skin in the genital area. The biopsy was not painful and only took a minute.
Thank you doctor for your informative video on LS. I was diagnosed by my gynaecologist years ago and treatment has been as I need it approach; and definitely, not a real understanding that I could develop cancer. I have never had a biopsy but I think that is now going to be a future request for my physician to provide me a referral. ❤
My first diagnosis was herpes, meds didn’t help. Got worse, then a biopsy was LS. That was two years ago, I am 77 years old. Loved the video, very helpful. Where are you located?
c.sec followed by no rest and care ,no knowledge ended with varicose vein then it ended in LS now in 15 yrs . .. it feels like some food triggered every time...also in back o Lower calf in symmetrically itch dark patches fades after corticosteroid and comes back around every new moon and full moon 😢😢.your video gave me clear knowledge and insight on this.thank u.
Yes! Misdiagnosis has been a huge issue. Get it biopsied and keep getting biopsies. I've been having issues with LS and inflammation for years (in my 40s). I was recently diagnosed with a rare nodular basal cell carcinoma on the LS area. The shocking thing is my first biopsy came back clear, but I still didn't feel right and asked to see a specialist. They rebiopsied it and it came back as BCC. I most likely will be facing surgery to have it removed but am taking lots of other steps trying to reduce inflammation and autoimmune symptoms. I've changed my diet (low carb/keto), started CBD/CBG/THC tinctures, and am also taking other targeted immune boosting supplements. My symptoms have largely disappeared at the moment.
Exactly! If something doesn’t feel right, I would definitely recommend getting a second opinion. I hope that your surgery for your basal cell goes well!
What are CBD/CBD/THC? I have had LS for 13 yrs diagnosed when I was 50. I have had a flare up recently and used Thuja cream on a pad, night and day, for about a week, I also cut back on sugars. This stopped my flare up. I must admit I have used the steroidal cream sparingly over the years. Checked the are the other day and labia still very white, but no splitting.. as another lady wrote on here my caregivers 😁 have now signed me off from my annual checks and only to get in touch if I'm worried. Maybe I should take a 6 monthly photo to see if there are changes, as who can remember what it looked like on the last check. What type of changes would we look for? Take care everyone, may your days be filled with sunshine and happiness.
“Seven yeast infections in six months” -> this perfectly resonates. With early diagnoses, does clobetasol maintenance tend to prevent progression to scarring?
Thank you for sharing the information. I have erosive lichen planus. Obgyn says the anatomy has changed with labia fusing completely. It’s been really hard finding specialists. May I please ask for assistance to find providers who can take me in earlier?
Thank you Dr. Babb for bringing this disorder to the forefront. I was diagnosed with LS 2 yrs ago. Unbeknownst to me I shaved and have been battling now with severe scar tissue (inner thighs) and have slowly been seeing my skin becoming back to normal. I’ve been using coconut oil and just recently started using prickly pear oil. Are there options for us all who’ve been inflicted with this disorder to remove hair without getting scarred? And secondly, firming the “elephant type skin” that appears to be spreading within the inner thigh areas? Thanks
HI, my name is Debbie. My PPO subscribed Terbinafine for my LS. Terbinafine is a by product of Lamisil, One tablet in the morning keeps my LS in check. I can't thank my doctor enough
Hello Dr Babb. I wanted to share something odd I noticed with mine. I have been getting allergy shots for mold and pollen and mine hasn't gotten inflamed in 5mths.
Retired RN diagnosed 20 years ago during uterine surgery. Have used Clobetasol 1-2 X weekly. Do you need to use this cream/ ointment 2X weekly to prevent squamous cell carcinoma? Total distortion of labia has occurred…New female gynecologist much more understanding of issues. This is not something one discusses with anyone, friends /family in general “ cocktail conversation “. I am a recent widow…
None of you appear to know HOW TO TREAT LICHEN Sclerosis. 20 minutes of “get a biopsy to try this try that” just keep the area clean. Warm water on a clean cloth. gives me a lot of Relief. PLEASE do not try the powder mistake.
Wow….. so informative. I’m 62. Retired LRRP/NICU RN. I was given a TVH/BSO @ 26 for endometriosis. Have ALWAYS had painful intercourse. I was dx via biopsy almost 2 years ago with SLE and Sjogrens. I’m still trying to get the right meds to treat my flares. 3 months ago had another biopsy for positive valvular SCC. Had a MOHLS procedure done. But I have continued to have itching. I recently made a GYN appointment for this. Doing research, I found you. Thank you for all your insight and direction. I feel I can be better informed on to what to ask her now. Is it possible to also have LS along with my other problems? Or possibly just the sojrens causing this? I don’t have skin thickening, but all the other symptoms are there. Thank you again Staci
Thank you Dr Babb. I am in the UK I have biopsy diagnosed LS when I was 50, 12 years ago. I was given steroid cream and a yearly check up to make sure area wasn't getting worse. Last year they signed me off and said they didn't need to see me anymore. I was never informed of the risk of squamous cell risks. I still have itching and do not use my cream regularly, but try keeping the area moisturised. I was not given the direction of soaking the skin and rubbing the cream in for 60 seconds to get through to the under layers of skin, I have seen this on another site. I have a question on how you would identify if your LS has become cancerous? What signs should I look for, if there are any. If this disease seems to be on the increase, why is it not something that is being highlighted or discussed in MSM to advise people what to look for?
Hi Meirwen! The only way to truly determine if the disease has progressed to cancer is to repeat a biopsy. Typically, however, you’ll notice worsening changes on the skin, including bleeding, or darkening of the area itself. Some patients will also develop an “ulcer“ that doesn’t seem to respond to the medication. As to why it isn’t talked about more, your guess is as good as mine - women’s health throughout the world seems to be a huge area that needs improvement! On a sidenote, are you Welsh?
Thank you. Your reply has somewhat put my mind at rest, and I will watch for any changes and contact my doctor for further investigation. Yes indeed, I am Welsh. How did you guess?
@@meirwenluxton8007 not necessarily, although if you have one autoimmune disease (like type-1 diabetes), you should always look for another! My mom’s family is from around Snowdonia, and I tried (horribly) to learn Welsh a few years ago. It’s hard when you have no one to talk to in the language to really get a handle on it!
Because of some ingredients in the ointments you have a slightly higher risk on cancer. After getting systemic reactions from corticosteroïd ointment I asked for Tacrolimus and then the childrens version. This worked even better and gave no side effects. But is more expensive unfortunately.
Dr. Cory, LS pain is not psychosomatic. Women with extensive scar tissue like me, which won't stretch at all, get vaginal tears, similar to painful anal fissures from constipation. The entire perineum can be affected, white and ruched, causing stretching injury during BMs. This is a serious condition with a high risk of other opportunistic infections, like pseudomonas in swimming pools, not just possible cancer. My libido was fine! I desired my husband very much. I cannot perform without vulvar and vaginal injury. Talk about low self esteem and putting stress on an excellent marriage. I don't want young women going through 15 years of daily pain like me, then being told it is their own body attacking itself, with no proof of that assertion. I am frustrated and furious that I can find no research into the actual causes of LS. Mine is atropic now. Some scary shit that. Naming something and finding co-morbidities is not the same as understanding it and formulating effective treatments. "No Known Cause" is ignorance but after over four and a half a decades of hearing the same lame lines, it seems like wanton, willful stupidity to me. My PCP, Obgyns and Urologists refused to treat my LS. Think about that. What makes this hideous affliction happen? Herpes or other indwelling longterm viral infections? Is LS like shingles? The pain is similar. Are some ubiquitous Bacteria responsible? Is there a healthy vulvar biome, which could be re-established after antibiotic treatments destroys the natural balance? Environmental toxins? Before you blow that idea off remember Millions of women died of breast cancer because of artificial hormones given to dairy cows to increase milk production. People went crazy. Now most supermarket milk says; "No hormones." Could the cause be chlorine in the water supply? If it was, we could distill our water and take mineral supliments. I ask because I swim for exercise & when I do my ALS gets worse even if I change and shower immediately. Cotton underwear, aviod sweets and sleeping comando was the medical advice I got. AMA has to be able to do better for young women than this.
Why don't doctors address the underlying cause? Autoimmune disorders can come out in various ways. Hashimoto is a related thyroid issue very often Associated with LS. My point is the inflammation which causes joint pain or arthritis, etc. has been almost eliminated by cutting out all carbs and sugars and going on a meat only diet. Yes, it's a very healthy diet. The doctors connected to the pharmaceutical companies will tell you it's not because they can't profit from you healing yourself through diet. I've had LS for 25 years, thyroid issues and the cartilage in my knees disintegrated. I was a mess. I started the carnivore diet and the inflammation went away immediately. I lost 10 pounds of water/inflammation in 2 days. In 1 week I could walk better. My blood pressure improved and my blood sugar went from 103 to 78.
That’s a great question. I know personally, I always try to address the whole person, but for other providers the issue may be something that is really due to time, knowledge base, etc. There’s definitely lots of information about gut health and autoimmune disorders, so it’s some thing that, in my mind, should always be looked into.
I'm interested in trying this. What is your typical diet for a day/week, do you drink coffee/ wine etc? How is tge LS on this eating regime. Thank you.
@@dr.coreybabb Dr. Babb! I could KISS you for saying you always try to address the whole person! I'm 68 YO and you are a rarity among Drs. Actually, currently, I do not KNOW of any other Drs who do this. You come in - they listen to symptoms and generally write a prescription, and then you leave. The state of Medicine overall in the United states is horrible. - that's just my opinion.
@@meirwenluxton8007 Hi You may never see this - but, I am on the same "diet" The type of diet she is describing is "Carnivore" and it works. However, I have also had to remove Dairy because I found out Dairy was causing me big flares. So sad, because I really love cheeses. But I also like not having to deal with painful flare ups more. - so dairy had to go.
Yes thank you for the video I have a question. I’ve had two positive biopsies for lichen sclerosis: one by a gynecologist, one by the dermatologist, they were both one and two years ago respectively. They both want to do another biopsy-I’m hesitant because it takes so long for that tissue to heal (I can always tell, like you mentioned in the video that I’ve had slight nerve damage). **would you suggest more biopsies? if so, how often? for I seem to keep my LC under control with clobetasol, using a bidet, aquafer, and Uber lube for moisturizer and during sex. I’m 67 and fair skinned. no other health concerns- Thank you very much
It can't be seen by visual exam? What else could look like Lichen Sclerosus? It would seem that's enough to begin treatment, rather than worsen an already difficult disease by punch biopsy!
Ah, that’s a great question! The three main lichenoid diseases of the vulva share similar characteristics to the naked eye, especially in early stages. Aside from those, vulvar psoriasis and even precancerous vulvar intraepithelial neoplastic lesions can have similar “gross” changes. The big reason to biopsy is because while steroids may be used in all of those conditions, the type and frequency of application can vary. Not only that, but LS, for instance, can progress to cancer, whereas LSC will not. So long-term prognosis is dependent upon correct diagnosis as well.
I just learned that my herpies is Lichen sclerosus There are reasons too why this could be too I have had shock in my life And I used to work for a Biomed Library and the site also worked with radiation When I left this job I was told my T cells were low and to go to my physician and find out why I was so alarmed I went and no nothing but inconsistent tests? I'm guess here however I guess my immune system goes down and up which can make sense Thanks for this information another doctor tipped me off to this as my symptoms seem to definitely match what these doctors are saying
It’s unfortunate, but a lot of patients have similar stories - that their LS is Incorrectly diagnosed as herpes. I definitely recommend that you see a provider who will diagnose it with a biopsy, that should put any doubt at rest.
Dr. Babb, a lot of women with LS refuse to use steroid ointments for health reasons. What are the dangers (if any) of long term use of clobetasol twice a week?
Thanks for asking this! A reality, you are much more likely to have issues with your LS then you are to suffer from tissue breakdown from excessive steroid use. As such, the gold standard is still ultrapotent steroids for the treatment of LS. Now, once a person is out of a flare, and using more “maintenance“ dosing, the frequency of steroid application can be reduced from daily application depending on their disease state.
@@dr.coreybabb i was given steroid cream called Triderm twice daily for 5 weeks. At first my skin got better but latter it become even more atrophic. What was wrong with this threatment. I applied large amounts. Should i not use steroid creams again if it trigered atrophy?
Can high doses of Vit D help this. I have Epidermolytic Hyperkeratosis and suspect i may have this as well and maybe even this AND Morphea but it's been hard to find a doctor who can Dx me.
It is a pathogen that is causing the itchiness, reason why there are lots of lymphocyte's aggregation in the LS area. Why not to look for it and treat the cause?
Thank you for speaking about this. I am hoping that the word gets out about this disorder. I am also hoping that there are better choices soon. Would you recommend HRT for pre-menopausal women? And do you believe this would help? (I am talking about medications not topical). Thank you!
There’s a definitely a place for hormone therapy in premenopausal patients - it just has to be a bit more “tailored” depending on if they’re still menstruating
Sorry for just getting back to you. The ISSVD is the society that carries with it the most specialists in LS. You can get on their website, and they have a “find a provider“ section that could be very helpful for you.
Hello doctor. I m a man with a mild LS. I have the skin getting white dry and hard by the time at the glans. I m applying protopic 0.1% and cream for dry skin every day. Im not satisfied because dry and white skins appear more and more... Im trying to find someone to help me further... Can you do something for me ? I live in Greece and if you can help me out i could pay u a visit. I haven't done biopsy eince my doctor says that he is sure that this i LS i have.
Hello there. I got lichen sclerosis 1 yr after my husband passed away. I’m 76 & have decided that I’ll be alone for the remainder of my life. What man will want someone who can’t satisfy them. I really miss being sexual.
vulva lichen simplex chronicus what is the exact treatment is there any what is a dangerous disease does lichen turn into sclerosis in the future please help
Should biopsy be done before or after starting steroids or protopic? If treatment has started, should it be paused for a while to aid in diagnosis with biopsy?
Biopsy confirmed LS. Supposed to be early stage. I have not been prescribed an ultra potent steroid but a strong moderate one. Is it possible that will be successful? Can I expect the white skin to disappear if in remission?
As an autoimmune condition, it’s due to the immune system attacking the target tissue - in this case the skin. As such, it would be related to other AI skin issues such as psoriasis, lichen planus, etc.
Hi . Do you think I have this ? My vulva is burning & red. It’s very painful. Iv been given estrogen but it’s not helping? Can you reply me please? I’m in Scotland. Thank you.
Hi Dorothy, I’d be happy to help! Based off your description I’m not sure if LS is the diagnosis I would start with. Has anyone evaluated you for pudendal neuralgia?
@@dr.coreybabb hi . I have googled pudendal neuralgia & I have all the symptoms of it . I feel I’m sitting on a lump & sit on my side. Iv had it for two & half years. I’ll write it down for my doctor. What meds would you recommend please? I also have syatica. I think you have diagnosed me correctly. Thank you . Wish you were my doctor. X
Usually you would start with a neurologic medication like lyrica or gabapentin. You could also try a pudendal nerve block, and if that takes away the pain, you’ve got your answer!
@@dr.coreybabb thank you very much . I have been suffering for 2+ years. I 🙏 iv got an answer . I have an appointment on Friday with doctor & will give her your diagnosis & see what she gives me . Much appreciated. 👍
Do you worry if the fusing has completely covered the clitoris and the urethra? I was told it could be separated byt it was many years ago, fusing has not stopped agraid it would fuse shut again.
I would definitely see some about that. While it can be taken down just by manual separation, you definitely want to make sure that you’re addressing the underlying inflammation and hormonal issues, if they are there.
If the only symptom is tearing, I would definitely want to make sure that you are dealing with LS, and not some other condition. The biopsy would confirm that.
Here is what a bright young woman dematologist says re; LS. ruclips.net/video/tT_R829o810/видео.htmlsi=yCyeetcNQzji78Um My thought is, if we can find the cause of this one painful complex, we might be able to help many other "Auto-imune" disorders. Bodies attacking themselves for no reason makes no sense to me. Back in the day, there were many words for coughing but causes were not understood. Asthma is not congestive heart failure or pneumonia. LS must be caused by something or a combination of somethings. If it really is genetic, where are the gene therapies?
Hi Dr. Babb. I was diagnosed by my family doc on Aug 18 and started the Clobetasol the next day. I used it until Aug. 28 and stopped because I had a vaginal hysterectomy for a grade 3 uterine prolapse. The surgeon took two punch biopsies during my surgery and told me that they don’t think I have LS as I only have the white spots from the bottom of the vagina to the anal area. I have never had any pruritus but do have a little bit of pain in the area of the lesions. The skin around the lesions is normal skin…no thickening or licheification. The biopsy results are not back yet. My question is will they be able to get results from the biopsy since I was using the steroids prior to the testing? Could this be Lichen Simplex Chronicus? I have not met with the surgeon for my follow up so I am really in the dark right now and would like to resume the treatment again as soon as possible. Have you had any patients or have you seen any with just the white spots but no itching whatsoever? I have had the spots since at least January. I really don’t know when they appeared. That is something I wish doctors would tell their patients…especially post menopausal patients…to get a mirror and check once in a whole to see if there are any changes. I honestly have to say that I never checked things over. Thank you for reading my question. Ps I, like Jacquelyn, live in Ontario, Canada.
Hi Cherry, Thanks for reaching out. There are things that cause vulvar “leukoplakia,“ otherwise known as those white areas, besides, LS. That said, areas of whiteness encompassing the perianal and perineal region in a patient with previously diagnosed LS definitely sound like LS. LSC often has itching as its main symptom, so, with the absence of itching, I would be very suspicious of that diagnosis. With clobetasol treatment, you can see the resolution of the condition at the histologic level - this is actually what we’re looking for, when we do repeat biopsies, and why clobetasol is such an effective therapy. If you had one previous biopsy, that demonstrated the condition, however, and then had a repeat biopsy at the same location, the pathologist should be able to compare those two biopsy samples and look for change. I hope that helps!
have you looked at LS in men? yes we are rare, only 10% of LS sufferers are men; an i have lived in chronic pain for nearly 4 years now. I was diagnosed by biopsy so it is confirmed i never had any itching, not then not now ONLY CRIPPLING PAIN have you looked at LS in men because i once tried a treatment recommended by a woman dr and it was pure agony. and many of the symptoms you describe in women i never had
It definitely does not discriminate between men or women, although you’re right, most people with the disease identify as female. I’m curious about which treatment was so painful, and if they diagnosed all the issues going on, not just LS
Nope, I have been off of gluten, sugar, dairy, went full carnivore, today after fasting 24* ate a steak with only salt and water, within 20 minutes I was in serious pain ( yes I’ve been biopsied) beginning on an extended water only fast to try and clear it up as literally everything flares it, so no not true for everyone, wish it was that simple
So that’s not a solution to the issue - it may be a way to keep the tissue moisturized, but it’s definitely not going to address the underlying issue at all in term of inflammation or cancer prognosis
Can someone have LS without any white patches? I have all the symptoms, but only see redness (probably due to irradiation & inflammation), and not so much lack of pigment… Thank you.
He mentions Nisha McKenzie in Grand Rapids (she practices at Women's+ Health Collective). She is absolutely wonderful! I'm not sure where in Michigan you are, but if you are anywhere near GR, I highly recommend Nisha. Also, Natasha DeHaan, FNP is excellent and knows her sh*t about LS. She is also in GR. Good luck!
Dr. Babb, I can't thank you enough for this. I only WISH that Drs would take the time to check out WHY patients who present to them with horrible itch and obviously in pain, and not just gaslight them by pushing them off and telling them they have a yeast infection. I'm So angry. For well over a year, I was told over and over again that I had a yeast infection and my Dr. wouldn't even take a LOOK, and told me that wasn't "her area". FINALLY, after over a year, of horrible symptoms, I arrived at her office, in near hysterics. I begged her to look into Lichen Schlerosus (because by that time I had diagnosed myself) She pulled out her phone and I guess looked it up and immediately prescribed a small amount (small tube) of Clobetasol until I could get to my gyno. (It took me 4 months to get an appointment with a GYN).. I guess after going through this - I wish Drs. would just do checks for Lichen's Scherlosus with everyone who walked through the door with uncontrollable itch. IT should NEVER EVER take over a year to get diagnosed and start being treated. For many of us there is just so much horrible suffering that comes with this disease. More needs to be done. TY again Dr. Babb.
The suffering is almost debilitating! Love your comment(😓) and thank you Dr. Babb!! What a Godsend!!!!❤️🙏
Thank you Dr. Babb! I’ve had LS since I was a little girl. I’m 57 now. You made me cry. You’re the first person I have heard talk about this that truly understands the psychological aspect of this awful disease. Thank you.
Do you have extragenital LS ?
Recently diagnosed with this condition. This week had surgery for labial/vaginal adhesion excision to allow me to pee. For over a month it had gotten to the point I could not pee comfortably. Will be using the recommended ointment also and ice treatment as was as a vaginal estrogen cream. All of this is new. I've suffered since last November, and had been treated for a UTI. Then things got very bad and underwent the surgery this past week. A catheter was inserted to help me pee. I'm now peeing on my own. This is a devastating condition. Thankful I found the right uro/gynocological doctors that are treating this.
Collette, wasn’t the surgery awfully painful? I had a biopsy and two days later still so painful when I pee!🥵
Very good video. Wish you were my doctor; had a wonderful lady and she passed away. I was itching so did a mirror exam and noticed a pearly white patch that had suddenly surfaced. My doctor removed it and it came back as squamous cell carcinoma. She said it shouldn't itch any more, but it did, horribly. She diagnosed me with LS by sight -- she saw mall blood blisters and a wasp-shaped patch of pale skin. My biopsy was negative. We tried different shower gels, laundry soaps etc. but nothing helped. Finally she put me on Synalar and it was fair, I think just rubbing something there helped. I cannot get into a tub because I had a stroke and am partly paralyzed. My fiance has died so I am not sexually active right now, but who's to say what the future brings. My itching is still present, more toward the back (perineum?) than the front. It's nowhere near the clitoris. It is definitely a mental disease; sometimes I feel so miserable I could just about lay down and die.
I know exactly how you feel!!🙏😔
I understand! I too suffer with this condition! I do the best I can with the Clobetasol. Let me mention that I am 57 and have had no romance in several years. I am ok with that because I feel like it would be torture. I pray for all of us that have it!!
Thank you so much for this valuable information.
I have had LS, for 10 years and have suffered immense pain that comes with the condition.
I had biopsies done which confirmed it.
I feel as though, I was lead to think it was a minor condition, so I have not really talked about it and suffered in silence.
Here in the UK, they don't follow up at the gynaecologist anymore, as they previously did as a yearly check.
I have only been given the ointment. I am so glad you highlighted the mental impact, and fusions, which I have.
I also did not know that in remission you should still use the ointment once a week, which I shall now do.
Once again thank you for all this information.
Thank you very much for mentioning the psychological/sexual trauma and impact on our self perception. Your words are very helpful and comforting!!! It feels exactly as you mention it! But the medical persons don‘t adress this and we feel left alone and scared. Thank you for being so empathic! It helps so much!
It started when I was 14 and I was diagnosed 3 month ago.
I am 60 now😢
Just got diagnosed yesterday. What a relief to know it wasn’t just me staring into the future of getting older? I have never really had itchiness mine went straight to painful, like sitting on knives.
This was so very informative. I’m 74 and am just now finding out what has been going on with me the the past several years.
Than you Dr Babb, I am recently diagnosed at 61, typically over treated for yeast infections until a different Dr, female, took a swab and no yeast! LS. My previous Obgyn retired and then we moved so it's difficult finding new health carers you are comfortable with. And you are so right about treating the whole person because I am struggling with the whole thing, as well as already dealing with grief from the loss of my mum and my 2 dogs within 6 weeks earlier this year....but have found Jaclyn and Lost Labia Chronicles, so have support there but I am in Australia. I also have Hashimotos and IBS, so just another thing to deal with......😏
Wow, that’s a lot to deal with! Thank you so much for reaching out - I’m happy to help out at any way that I can, whether that’s providing information or potentially connecting you with providers in Australia.
@@dr.coreybabb thanks so much, would appreciate any information on providers in Queensland, I have recently found out about Dr Gayle Fischer, but she is in Victoria.
@@jaynesellers7794 I have a couple of people in New South Wales, in Northbridge- would that help?
@@dr.coreybabb Thank you for replying, unfortunately no NSW is still too far, I live about 4 hour drive from Brisbane in Queensland and NSW is the next state. But thank you.
It took 20 years to get properly dx! It took one doctor to look at me and say I know what you have but let’s do a biopsy!! I wanted to cry with relief!! Thank you for this video I wish more doctors understood this!
You’re amazing, Dr. Babb! Thank you for being passionate about a disease many are suffering with and not always getting the right help! I wish you were here in Toronto, ❤️❤️❤️
A first class talk, well done
Thank you!
Extremely comprehensive and reassuring. Thank you so much
Thank you for your comprehensive discussion surrounding this topic. I've been biopsy diagnosing LS for years, found quite a few surprise cases in my early years, women with chronic vulvar pruritis that I thought maybe related to products they were using. But per biopsy, LS. I typically treat to get them out of symptomatic flare, then one to two times a week I found the steroids worked much better after a 10 minute warm water soak, and rubbing the steroid ointment into the affected area for at least 90 seconds. Your discussion was very reassuring, Thank you again!
Fantastic video. Just had a biopsy anticipating a diagnosis. I am lucky to have a GP that is prepared to investigate at my suggestion. I would bet my house on a positive diagnosis of LS after several weeks of failed treatment for fungal, bacterial etc. My GP was on the ball because of her concern about the constant reappearance of white skin in the genital area. The biopsy was not painful and only took a minute.
Thank you for speaking about LS . It is life altering, 61 post m diagnosed 5 years ago with punch biopsy.
Such an enlightening video. So pleased you addressed the psychological effect which is often not considered. Many thanks.
This was excellent. Glad I found this today. Thank you!
Thank you doctor for your informative video on LS. I was diagnosed by my gynaecologist years ago and treatment has been as I need it approach; and definitely, not a real understanding that I could develop cancer. I have never had a biopsy but I think that is now going to be a future request for my physician to provide me a referral. ❤
How do I find a specific doctor in my area NC to help me with this! Thank you for making these videos and helping women with this horrible disease!
My first diagnosis was herpes, meds didn’t help. Got worse, then a biopsy was LS. That was two years ago, I am 77 years old. Loved the video, very helpful. Where are you located?
c.sec followed by no rest and care ,no knowledge ended with varicose vein then it ended in LS now in 15 yrs . .. it feels like some food triggered every time...also in back o Lower calf in symmetrically itch dark patches fades after corticosteroid and comes back around every new moon and full moon 😢😢.your video gave me clear knowledge and insight on this.thank u.
God BLESS! Please post where it is and what it looks like.
Wow, very powerful and educating. Thanks for doing this.
My pleasure
How come MD ‘s never talk about diet . Autoimmune diseases are mainly DIET related . How about finding the Root cause and (Why) this is happening????
Can u tell me more about it?
I have this symptom and I'm trying to find a solution....
So what about the diet?
Exactly, our skin is an organ.
Because they are not trained in diet and nutrition. They basically diagnose and treat with drugs.
@@Edouardostry the auto immune diet book.
Get rid of inflammation,get rid of any disease with Diet change ….. It’s the Standard American diet that is killing us or making us sick . 😝😝
Yes! Misdiagnosis has been a huge issue. Get it biopsied and keep getting biopsies.
I've been having issues with LS and inflammation for years (in my 40s). I was recently diagnosed with a rare nodular basal cell carcinoma on the LS area. The shocking thing is my first biopsy came back clear, but I still didn't feel right and asked to see a specialist. They rebiopsied it and it came back as BCC.
I most likely will be facing surgery to have it removed but am taking lots of other steps trying to reduce inflammation and autoimmune symptoms. I've changed my diet (low carb/keto), started CBD/CBG/THC tinctures, and am also taking other targeted immune boosting supplements. My symptoms have largely disappeared at the moment.
Exactly! If something doesn’t feel right, I would definitely recommend getting a second opinion. I hope that your surgery for your basal cell goes well!
What are CBD/CBD/THC? I have had LS for 13 yrs diagnosed when I was 50. I have had a flare up recently and used Thuja cream on a pad, night and day, for about a week, I also cut back on sugars. This stopped my flare up. I must admit I have used the steroidal cream sparingly over the years. Checked the are the other day and labia still very white, but no splitting.. as another lady wrote on here my caregivers 😁 have now signed me off from my annual checks and only to get in touch if I'm worried. Maybe I should take a 6 monthly photo to see if there are changes, as who can remember what it looked like on the last check. What type of changes would we look for? Take care everyone, may your days be filled with sunshine and happiness.
@@meirwenluxton8007which country are you in? Insist on a biannual or at minimum an annual exam.
I have had PRP treatment it works
“Seven yeast infections in six months” -> this perfectly resonates. With early diagnoses, does clobetasol maintenance tend to prevent progression to scarring?
Hello Dr. Babb - Can you address the PAIN issue of LS? What can be done to stop the intense burning pain?
I believe he mentioned topical lidocaine.
Thank you for sharing the information. I have erosive lichen planus. Obgyn says the anatomy has changed with labia fusing completely. It’s been really hard finding specialists. May I please ask for assistance to find providers who can take me in earlier?
Thank you Dr. Babb for bringing this disorder to the forefront. I was diagnosed with LS 2 yrs ago. Unbeknownst to me I shaved and have been battling now with severe scar tissue (inner thighs) and have slowly been seeing my skin becoming back to normal. I’ve been using coconut oil and just recently started using prickly pear oil. Are there options for us all who’ve been inflicted with this disorder to remove hair without getting scarred? And secondly, firming the “elephant type skin” that appears to be spreading within the inner thigh areas? Thanks
HI, my name is Debbie. My PPO subscribed Terbinafine for my LS. Terbinafine is a by product of Lamisil, One tablet in the morning keeps my LS in check. I can't thank my doctor enough
Hello Dr Babb. I wanted to share something odd I noticed with mine. I have been getting allergy shots for mold and pollen and mine hasn't gotten inflamed in 5mths.
Thank you very much
You are very welcome
Retired RN diagnosed 20 years ago during uterine surgery. Have used Clobetasol 1-2 X weekly. Do you need to use this cream/ ointment 2X weekly to prevent squamous cell carcinoma? Total distortion of labia has occurred…New female gynecologist much more understanding of issues. This is not something one discusses with anyone, friends /family in general “ cocktail conversation “. I am a recent widow…
ruclips.net/video/vltY9mr8E68/видео.html
I’m getting worried!
None of you appear to know HOW TO TREAT LICHEN Sclerosis. 20 minutes of “get a biopsy to try this try that” just keep the area clean. Warm water on a clean cloth. gives me a lot of Relief.
PLEASE do not try the powder mistake.
Wow….. so informative. I’m 62. Retired LRRP/NICU RN. I was given a TVH/BSO @ 26 for endometriosis. Have ALWAYS had painful intercourse. I was dx via biopsy almost 2 years ago with SLE and Sjogrens. I’m still trying to get the right meds to treat my flares. 3 months ago had another biopsy for positive valvular SCC. Had a MOHLS procedure done. But I have continued to have itching. I recently made a GYN appointment for this. Doing research, I found you. Thank you for all your insight and direction. I feel I can be better informed on to what to ask her now. Is it possible to also have LS along with my other problems? Or possibly just the sojrens causing this? I don’t have skin thickening, but all the other symptoms are there. Thank you again
Staci
Thank you Dr Babb. I am in the UK I have biopsy diagnosed LS when I was 50, 12 years ago. I was given steroid cream and a yearly check up to make sure area wasn't getting worse. Last year they signed me off and said they didn't need to see me anymore. I was never informed of the risk of squamous cell risks. I still have itching and do not use my cream regularly, but try keeping the area moisturised. I was not given the direction of soaking the skin and rubbing the cream in for 60 seconds to get through to the under layers of skin, I have seen this on another site. I have a question on how you would identify if your LS has become cancerous? What signs should I look for, if there are any. If this disease seems to be on the increase, why is it not something that is being highlighted or discussed in MSM to advise people what to look for?
Hi Meirwen!
The only way to truly determine if the disease has progressed to cancer is to repeat a biopsy. Typically, however, you’ll notice worsening changes on the skin, including bleeding, or darkening of the area itself. Some patients will also develop an “ulcer“ that doesn’t seem to respond to the medication.
As to why it isn’t talked about more, your guess is as good as mine - women’s health throughout the world seems to be a huge area that needs improvement!
On a sidenote, are you Welsh?
Thank you. Your reply has somewhat put my mind at rest, and I will watch for any changes and contact my doctor for further investigation. Yes indeed, I am Welsh. How did you guess?
One further question. Is there a link between diabetes and LS?
@@meirwenluxton8007 not necessarily, although if you have one autoimmune disease (like type-1 diabetes), you should always look for another!
My mom’s family is from around Snowdonia, and I tried (horribly) to learn Welsh a few years ago. It’s hard when you have no one to talk to in the language to really get a handle on it!
Because of some ingredients in the ointments you have a slightly higher risk on cancer. After getting systemic reactions from corticosteroïd ointment I asked for Tacrolimus and then the childrens version. This worked even better and gave no side effects. But is more expensive unfortunately.
Dr. Cory,
LS pain is not psychosomatic. Women with extensive scar tissue like me, which won't stretch at all, get vaginal tears, similar to painful anal fissures from constipation. The entire perineum can be affected, white and ruched, causing stretching injury during BMs. This is a serious condition with a high risk of other opportunistic infections, like pseudomonas in swimming pools, not just possible cancer.
My libido was fine! I desired my husband very much. I cannot perform without vulvar and vaginal injury. Talk about low self esteem and putting stress on an excellent marriage.
I don't want young women going through 15 years of daily pain like me, then being told it is their own body attacking itself, with no proof of that assertion. I am frustrated and furious that I can find no research into the actual causes of LS. Mine is atropic now. Some scary shit that. Naming something and finding co-morbidities is not the same as understanding it and formulating effective treatments. "No Known Cause" is ignorance but after over four and a half a decades of hearing the same lame lines, it seems like wanton, willful stupidity to me. My PCP, Obgyns and Urologists refused to treat my LS. Think about that.
What makes this hideous affliction happen? Herpes or other indwelling longterm viral infections? Is LS like shingles? The pain is similar. Are some ubiquitous Bacteria responsible? Is there a healthy vulvar biome, which could be re-established after antibiotic treatments destroys the natural balance?
Environmental toxins? Before you blow that idea off remember Millions of women died of breast cancer because of artificial hormones given to dairy cows to increase milk production. People went crazy. Now most supermarket milk says; "No hormones."
Could the cause be chlorine in the water supply? If it was, we could distill our water and take mineral supliments. I ask because I swim for exercise & when I do my ALS gets worse even if I change and shower immediately. Cotton underwear, aviod sweets and sleeping comando was the medical advice I got. AMA has to be able to do better for young women than this.
Why don't doctors address the underlying cause? Autoimmune disorders can come out in various ways. Hashimoto is a related thyroid issue very often
Associated with LS.
My point is the inflammation which causes joint pain or arthritis, etc. has been almost eliminated by cutting out all carbs and sugars and going on a meat only diet. Yes, it's a very healthy diet. The doctors connected to the pharmaceutical companies will tell you it's not because they can't profit from you healing yourself through diet.
I've had LS for 25 years, thyroid issues and the cartilage in my knees disintegrated. I was a mess. I started the carnivore diet and the inflammation went away immediately. I lost 10 pounds of water/inflammation in 2 days. In 1 week I could walk better. My blood pressure improved and my blood sugar went from 103 to 78.
That’s a great question. I know personally, I always try to address the whole person, but for other providers the issue may be something that is really due to time, knowledge base, etc. There’s definitely lots of information about gut health and autoimmune disorders, so it’s some thing that, in my mind, should always be looked into.
I'm interested in trying this. What is your typical diet for a day/week, do you drink coffee/ wine etc? How is tge LS on this eating regime. Thank you.
@@dr.coreybabb Dr. Babb! I could KISS you for saying you always try to address the whole person! I'm 68 YO and you are a rarity among Drs. Actually, currently, I do not KNOW of any other Drs who do this. You come in - they listen to symptoms and generally write a prescription, and then you leave. The state of Medicine overall in the United states is horrible. - that's just my opinion.
@@meirwenluxton8007 Hi You may never see this - but, I am on the same "diet" The type of diet she is describing is "Carnivore" and it works. However, I have also had to remove Dairy because I found out Dairy was causing me big flares. So sad, because I really love cheeses. But I also like not having to deal with painful flare ups more. - so dairy had to go.
Yes thank you for the video I have a question.
I’ve had two positive biopsies for lichen sclerosis: one by a gynecologist, one by the dermatologist, they were both one and two years ago respectively.
They both want to do another biopsy-I’m hesitant because it takes so long for that tissue to heal (I can always tell, like you mentioned in the video that I’ve had slight nerve damage).
**would you suggest more biopsies? if so,
how often? for
I seem to keep my LC under control with clobetasol, using a bidet, aquafer, and
Uber lube for moisturizer and during sex. I’m 67 and fair skinned. no other health concerns-
Thank you very much
It can't be seen by visual exam? What else could look like Lichen Sclerosus? It would seem that's enough to begin treatment, rather than worsen an already difficult disease by punch biopsy!
Ah, that’s a great question! The three main lichenoid diseases of the vulva share similar characteristics to the naked eye, especially in early stages. Aside from those, vulvar psoriasis and even precancerous vulvar intraepithelial neoplastic lesions can have similar “gross” changes. The big reason to biopsy is because while steroids may be used in all of those conditions, the type and frequency of application can vary. Not only that, but LS, for instance, can progress to cancer, whereas LSC will not. So long-term prognosis is dependent upon correct diagnosis as well.
Wow, dr. ❤️🙏
Is there any evidence around LS and gut health in particular bacteria imbalance?
I just learned that my herpies is Lichen sclerosus There are reasons too why this could be too I have had shock in my life And I used to work for a Biomed Library and the site also worked with radiation When I left this job I was told my T cells were low and to go to my physician and find out why I was so alarmed I went and no nothing but inconsistent tests? I'm guess here however I guess my immune system goes down and up which can make sense Thanks for this information another doctor tipped me off to this as my symptoms seem to definitely match what these doctors are saying
It’s unfortunate, but a lot of patients have similar stories - that their LS is Incorrectly diagnosed as herpes. I definitely recommend that you see a provider who will diagnose it with a biopsy, that should put any doubt at rest.
Thanks ❤
Dr. Babb, a lot of women with LS refuse to use steroid ointments for health reasons. What are the dangers (if any) of long term use of clobetasol twice a week?
Thanks for asking this! A reality, you are much more likely to have issues with your LS then you are to suffer from tissue breakdown from excessive steroid use. As such, the gold standard is still ultrapotent steroids for the treatment of LS. Now, once a person is out of a flare, and using more “maintenance“ dosing, the frequency of steroid application can be reduced from daily application depending on their disease state.
@@dr.coreybabb i was given steroid cream called Triderm twice daily for 5 weeks. At first my skin got better but latter it become even more atrophic. What was wrong with this threatment. I applied large amounts. Should i not use steroid creams again if it trigered atrophy?
Would you please address Vulvar Lichen Simplex Chronicus? Thank you
What about erosive lichen planus
Also if you are at all familiar with EHK, will a biopsy be able to distinguish between EHK and these other two skin diseases?
Can high doses of Vit D help this.
I have Epidermolytic Hyperkeratosis and suspect i may have this as well and maybe even this AND Morphea but it's been hard to find a doctor who can Dx me.
Hi . Do you think I have this? My vulva is burning & red? It’s very painful. Can you help me please. Thank you.
It is a pathogen that is causing the itchiness, reason why there are lots of lymphocyte's aggregation in the LS area. Why not to look for it and treat the cause?
Thank you for speaking about this. I am hoping that the word gets out about this disorder. I am also hoping that there are better choices soon. Would you recommend HRT for pre-menopausal women? And do you believe this would help? (I am talking about medications not topical). Thank you!
There’s a definitely a place for hormone therapy in premenopausal patients - it just has to be a bit more “tailored” depending on if they’re still menstruating
I don't see answers to any questions but maybe someone out there knows. Can this affect your ability to urinate?
Very helpful. Can you recommend anyone in the Arizona area?
Sorry for just getting back to you. The ISSVD is the society that carries with it the most specialists in LS. You can get on their website, and they have a “find a provider“ section that could be very helpful for you.
How can we identify this in paediatric population?
Hello doctor. I m a man with a mild LS. I have the skin getting white dry and hard by the time at the glans. I m applying protopic 0.1% and cream for dry skin every day.
Im not satisfied because dry and white skins appear more and more...
Im trying to find someone to help me further...
Can you do something for me ?
I live in Greece and if you can help me out i could pay u a visit.
I haven't done biopsy eince my doctor says that he is sure that this i LS i have.
I. Hear you
Hello there. I got lichen sclerosis 1 yr after my husband passed away. I’m 76 & have decided that I’ll be alone for the remainder of my life. What man will want someone who can’t satisfy them. I really miss being sexual.
There are many treatments available! Don’t lose hope!
vulva lichen simplex chronicus what is the exact treatment is there any what is a dangerous disease does lichen turn into sclerosis in the future please help
Should biopsy be done before or after starting steroids or protopic? If treatment has started, should it be paused for a while to aid in diagnosis with biopsy?
I have a partial vulvectomy with dVIN and lichen sclerosis is that the same as lichen sclerous
Does having had dermal fillers such as juvederm restylane etc have an effect on LS;
Biopsy confirmed LS. Supposed to be early stage. I have not been prescribed an ultra potent steroid but a strong moderate one. Is it possible that will be successful? Can I expect the white skin to disappear if in remission?
Co2 laser could be a solution? What's your opinion? Can i use it if i have inflammation?
I have LS on my breast. Should I see a gynecologist or a dermatologist for treatment?
In that case, I would see a dermatologist.
👍👍
It is related with some autoimmune disease?
I definitely is!
@@dr.coreybabb and which are?
As an autoimmune condition, it’s due to the immune system attacking the target tissue - in this case the skin. As such, it would be related to other AI skin issues such as psoriasis, lichen planus, etc.
Hi . Do you think I have this ? My vulva is burning & red. It’s very painful. Iv been given estrogen but it’s not helping? Can you reply me please? I’m in Scotland. Thank you.
Hi Dorothy,
I’d be happy to help! Based off your description I’m not sure if LS is the diagnosis I would start with. Has anyone evaluated you for pudendal neuralgia?
@@dr.coreybabb hi . I have googled pudendal neuralgia & I have all the symptoms of it . I feel I’m sitting on a lump & sit on my side. Iv had it for two & half years. I’ll write it down for my doctor. What meds would you recommend please? I also have syatica. I think you have diagnosed me correctly. Thank you . Wish you were my doctor. X
Usually you would start with a neurologic medication like lyrica or gabapentin. You could also try a pudendal nerve block, and if that takes away the pain, you’ve got your answer!
@@dr.coreybabb thank you very much . I have been suffering for 2+ years. I 🙏 iv got an answer . I have an appointment on Friday with doctor & will give her your diagnosis & see what she gives me . Much appreciated. 👍
Do you worry if the fusing has completely covered the clitoris and the urethra? I was told it could be separated byt it was many years ago, fusing has not stopped agraid it would fuse shut again.
I would definitely see some about that. While it can be taken down just by manual separation, you definitely want to make sure that you’re addressing the underlying inflammation and hormonal issues, if they are there.
Is it recommended to biopsy when there are no visible signs and only symptoms or tearing?
If the only symptom is tearing, I would definitely want to make sure that you are dealing with LS, and not some other condition. The biopsy would confirm that.
Here is what a bright young woman dematologist says re; LS. ruclips.net/video/tT_R829o810/видео.htmlsi=yCyeetcNQzji78Um
My thought is, if we can find the cause of this one painful complex, we might be able to help many other "Auto-imune" disorders.
Bodies attacking themselves for no reason makes no sense to me.
Back in the day, there were many words for coughing but causes were not understood.
Asthma is not congestive heart failure or pneumonia.
LS must be caused by something or a combination of somethings.
If it really is genetic, where are the gene therapies?
Hi Dr. Babb. I was diagnosed by my family doc on Aug 18 and started the Clobetasol the next day. I used it until Aug. 28 and stopped because I had a vaginal hysterectomy for a grade 3 uterine prolapse. The surgeon took two punch biopsies during my surgery and told me that they don’t think I have LS as I only have the white spots from the bottom of the vagina to the anal area. I have never had any pruritus but do have a little bit of pain in the area of the lesions. The skin around the lesions is normal skin…no thickening or licheification. The biopsy results are not back yet. My question is will they be able to get results from the biopsy since I was using the steroids prior to the testing? Could this be Lichen Simplex Chronicus? I have not met with the surgeon for my follow up so I am really in the dark right now and would like to resume the treatment again as soon as possible. Have you had any patients or have you seen any with just the white spots but no itching whatsoever? I have had the spots since at least January. I really don’t know when they appeared. That is something I wish doctors would tell their patients…especially post menopausal patients…to get a mirror and check once in a whole to see if there are any changes. I honestly have to say that I never checked things over. Thank you for reading my question. Ps I, like Jacquelyn, live in Ontario, Canada.
Hi Cherry,
Thanks for reaching out. There are things that cause vulvar “leukoplakia,“ otherwise known as those white areas, besides, LS. That said, areas of whiteness encompassing the perianal and perineal region in a patient with previously diagnosed LS definitely sound like LS.
LSC often has itching as its main symptom, so, with the absence of itching, I would be very suspicious of that diagnosis.
With clobetasol treatment, you can see the resolution of the condition at the histologic level - this is actually what we’re looking for, when we do repeat biopsies, and why clobetasol is such an effective therapy. If you had one previous biopsy, that demonstrated the condition, however, and then had a repeat biopsy at the same location, the pathologist should be able to compare those two biopsy samples and look for change.
I hope that helps!
have you looked at LS in men?
yes we are rare, only 10% of LS sufferers are men; an i have lived in chronic pain for nearly 4 years now.
I was diagnosed by biopsy so it is confirmed
i never had any itching, not then not now
ONLY CRIPPLING PAIN
have you looked at LS in men because i once tried a treatment recommended by a woman dr and it was pure agony.
and many of the symptoms you describe in women i never had
It definitely does not discriminate between men or women, although you’re right, most people with the disease identify as female. I’m curious about which treatment was so painful, and if they diagnosed all the issues going on, not just LS
It completely goes away when you get off gluten!!
Nope, I have been off of gluten, sugar, dairy, went full carnivore, today after fasting 24* ate a steak with only salt and water, within 20 minutes I was in serious pain ( yes I’ve been biopsied) beginning on an extended water only fast to try and clear it up as literally everything flares it, so no not true for everyone, wish it was that simple
The solution is coconut oil people.
So that’s not a solution to the issue - it may be a way to keep the tissue moisturized, but it’s definitely not going to address the underlying issue at all in term of inflammation or cancer prognosis
@@dr.coreybabbSo how can you address the underlying issue? What can you do to not make this turn into cancer?
Drinking it or applying it topically?
So embarrassing for me.
Can someone have LS without any white patches? I have all the symptoms, but only see redness (probably due to irradiation & inflammation), and not so much lack of pigment… Thank you.
Yes
Wait, he mentioned Michigan, which is where I am. But on the website I only see Oklahoma locations… 🤔
He mentions Nisha McKenzie in Grand Rapids (she practices at Women's+ Health Collective). She is absolutely wonderful! I'm not sure where in Michigan you are, but if you are anywhere near GR, I highly recommend Nisha. Also, Natasha DeHaan, FNP is excellent and knows her sh*t about LS. She is also in GR. Good luck!