Thank you so much for all your care for this condition! I have a wonderful gynecologist who has helped me as I am reaching for remission with ointment going into 6 months treatment. To hear Dr Krapf re-enforcing the information makes me very happy I am on the way of decreasing the local inflammation on my skin. I love this channel. I did have a biopsy x3 and there was Candida albicans hyphae as well in the microscopic analysis. Treated for it, too. No Squamous cell carcinoma. Thank the Lord! I believe it is genetic, hormonal, diet, and from stress! I am always beng close to being diabetic so I do watch my diet closely. Of course I am post menopausal. I will be retiring from a stressful job in 2 weeks and believe I can really be healthy in regular sleep, diet, and exercise. And I do use moisturizers that make it a glad place! I am thankful for your research!
I'm so glad the channel has been helpful and you're in a good place. Please share your providers name and information so we can add them to our provider directory. There aren't enough good doctors to go around.
@@lichensclerosussupportnetwork She only focuses on gynecology to help women. I love her. I pay her cash since she doesn't take Medicare. Her name is Carolyn Riley, MD Cornerstonemd 12222 N Central Expy Ste 140 Dallas, TX 75243 469-801-8480 She has only seen 2 other cases of Lichen Sclerosis other than me. I can say I am being very close to remission today. She says I have responded to the 0.1% clobetasol excellently. Your posts have given me very much help in hand in hand on what I do with ointment. Application instructions of the clobetasol ointment I have gotten from you and I thank you for all the information that Dr Riley did not cover. Your channel is indespensible with my Dr's help. I am on application for only twice a week now. I love you dearly.
So glad i found this channel! I have been a lone in this journey for years now. I am 54 just stopped having periods 3mnths now, i have fibroids ontop of everything, since my estrogen has lowered, fibroids are shrinking, now i just need to get LS undercontrol, it seemed to flare up more during period, but i realised pads irritated me, and of course heavy longer periods didn't help. I have learned a lot in the little time i found this channel. I learned what to apply, how to apply, and frequency. Thankyou so much!❤❤Wondering if vit. E oil is ok as a moisturizer? Also, i think my diet is important, stress levels and so on. The part that gets me down is not feeling comfortable meeting anyone new, I havnt had a decent physical relationship in years, I feel maybe a new guy would not truly, or honestly understand my delima, and until now, haven't talked about it. anyway, thankyou for this channel.
We're so happy you found us as well! Vit. E oil has worked as an excellent moisturizer for many people. I would also encourage you to start talking to your doctor about topical estrogen if you haven't yet. You are not alone in worrying about dating. I can tell you the right person for you will understand and make space for you. It's also possible to get to a point where sex is pleasurable again. It can take some work, but many have done it. We have a new program around helping you have a sexual rebirth. It will help you discover who your new sexual being is because you are a sexual being, even if intercourse is off the table for now. You can find out more at lssupportnetwork.org/sexyback. We've also launched registration for our week-long summit, (W)holistic Healing Summit. It's a fantastic program. Check it out at whhs.lssupportnetwork.org.
Your podcasts are all excellent information - but this was particularly helpful in the breadth of topics covered. It answered some key questions I’ve had. Thank all of you were making this information easy accessible. (And I wish I lived in Tampa so I could make an appt with Dr. Krapf!)
I live in Louisiana & oh how I wish we had a Dr. Jill in this area! The docs I’ve been to don’t have a clue! So, if I understand her correctly, you can have LS but not know it till your estrogen level drops like during post menopause.
Completely understand your frustration. We're looking to launch a new program soon where we educate providers so more people have access to quality care. It is possible to have LS and not know it. Many people are asymptomatic until they have a progression in their condition.
I have learned so much from your podcasts! Thank you so much :) I have tried to take a long bath on the days I apply clobetasol. Unfortunately, I get UTIs with baths-no matter how clean my bathtub is :( Any suggestions?
You are so welcome! You can try a sitz bath. Or you can do like me and apply after a long hot shower. We had a lady at a virtual meetup tell us how she folds a wash cloth and wears it inside her underwear while she showers allowing the wash cloth to soak with water and sit against her skin. Good luck!
Oh my goodness. This helped so so much. My gyn told me I should feel better in 1-2 weeks!!! So happy to know it can take much longer. No I won’t be so frustrated
I completely understand. I don't know if it's the same for penile LS, but in vulvar LS, redness can be from scratching, rubbing, contact dermatitis, yeast infection, or a secondary condition. It should be looked at by your provider. I hope you get the care you need.
Thank you for all the informative podcasts. I am 57 and have had LS my entire adult life yet I have never really been educated well until my 2nd surgery (1st one 12/19 for Vulvar Cancer). After my 2nd surgery in Nov. I started doing sitz baths for healing and then continued the baths when restarting Clobetasol. I may be making a mistake though because during recovery I was told to blow dry the vulva for healing and it became a habit. Dr. Krapf says to pat dry so I’m afraid using the blow dryer after my incision has healed may not be the right thing now. Should I just be patting dry and skipping the blow dryer? TIA.
Yes the reason we soak is to soften the skin and open the pores. If you're blow drying it dry the pores are closing back up and it's reducing how much of the steroid gets absorbed. Patting dry is good enough. Sorry it took so long for you to get quality care. I hope you have continued health.🥰🤗
I firmly believe that it is an autoimmune condition - however, what causes that - especially, when you have nothing like this and no autoimmune conditions in your genetic background (at least as far as I know) Also, I believe that there is MUCH much more of a connection to lack of hormones in women who are post menopausal. I think that there could also be a connection to antibiotic use in post menopausal women (which kills gut health of course) I feel strongly that ALL women over the age of 45 (perimenopausal) should be put on vaginal estradiol and also be evaluated for HRT. I'm not a doctor, I'm just a very focused researcher. In short, I feel hormonal health and gut health are deeply connected to the developement of autoimmune problems - including LS
Great podcast, I wonder if medicine can inject the necessary anti inflammatory meds right to the 7th layer and bypass the ointment? Is there such a thing?
Hello there...I been in pain for over 2 years...thinking the doctor said I had sclerosis and hemroids. Yesterday I called to tell her that the meds for this is not working and the secretary told me that I do not have sclerosis and that it is lichen sclerosus. I was shocked. Now I am in severe pain and depressed. What should I do about the pain because the ointment is not working.
I was diagnosed with a biopsy for LS 1.5 months ago. I’m 63 post menopausal 14 years. Diagnosed 4 months ago with low estrogen. Presenting symptoms were itching then swollen left vulva. After starting vaginal estrogen the symptoms were worse. Redness moved to perineal and swelling. Fungal and bacterial swabs always negative. No visible signs of white patches. Switched to tablet estrogen and started steroid. The redness moved to anal area. One month after treatment the redness has decreased significantly and I have flare ups every 5-7 days in anal area. Several times it was mentioned redness is not LS…so what are we maybe missing?
I've not seen any indication steroids cause nerve damage. I've talked with Pelvic Health Physical Therapist Ashlie Crewe about persistent pelvic nerve pain, which seems to be an overreaction of the nerves from an initial pain. I encourage you to watch. It's very educational. ua-cam.com/video/CvNPIFBDjl4/v-deo.html&pp=gAQBiAQB
Kathy, do you know if micro cuts in the perineum area are always indicative of LS or can they be from something else like atrophy? I have the micro tares but no other signs for LS…no whiteness.
I have a question I was diagnosed with LS 5 months ago. I have no itching and the white patches are gone. I have been watching your videos and wanted to thank you for sharing these. Mybquestion is should I have redness on the skin on my bottom ? My skin looks red like a diaper rash. I think I may have applied outside the area thar needs medication could this be the issue? Also, i think i am applying more than the pea size amount that you recommend. My doctor just prescribed the medicine and i was on my own😔was not told to soak just apply meds 2x a week
Thank you for the kind words. You should not have redness. It sounds like you may have developed a skin yeast infection. You'll want to be seen by your provider to confirm and treat. Check out this post. lssupportnetwork.org/do-steroids-cause-yeast-infections-in-people-with-lichen-sclerosus/
How much further into the system does the steroid/ ointment travel? I have seen the damage steroids have done to my husband osteoporosis and the china bone syndrome which he now has. I personally wouldn't put steroids anywhere near my body. What do you say to that?
We've talked about this in part two of this interview. Very small amount gets into the system when used correctly. It's very localized. Check out this video ua-cam.com/video/ZaDDBA2_F74/v-deo.html
Is it normal that steroid eats up your skin to pretty much raw for LS spots or would I need to stop the application if that occurs? Also, is it normal that the LS effected area will appear swollen during treatment as in one part of the vulva side is bigger and the healthy one is normal?
No this is not normal. You may want to have your provider look at you again. You could have been misdiagnosed with LS, have a secondary condition, be using too much steroid, or have an allergy to the steroid. There are options for all these scenarios but you need to get examined by a provider that knows what they're doing. Good luck. 🥰🤗
@@lichensclerosussupportnetwork thank you for this information. I actually have LP which is similar to LS but a bit different. I ended up getting a different steroid prescribed (clobetasol) and this seems to be working much better. It is also not easy to find a provider/gynecologists that knows much about LP/LS in my area...
Thanks Kathy. I love hearing from Dr.Krapf. She's so helpful.
You are so welcome! Yeah, she's great.
Thank you so much for all your care for this condition! I have a wonderful gynecologist who has helped me as I am reaching for remission with ointment going into 6 months treatment. To hear Dr Krapf re-enforcing the information makes me very happy I am on the way of decreasing the local inflammation on my skin. I love this channel. I did have a biopsy x3 and there was Candida albicans hyphae as well in the microscopic analysis. Treated for it, too. No Squamous cell carcinoma. Thank the Lord! I believe it is genetic, hormonal, diet, and from stress! I am always beng close to being diabetic so I do watch my diet closely. Of course I am post menopausal. I will be retiring from a stressful job in 2 weeks and believe I can really be healthy in regular sleep, diet, and exercise. And I do use moisturizers that make it a glad place! I am thankful for your research!
I'm so glad the channel has been helpful and you're in a good place. Please share your providers name and information so we can add them to our provider directory. There aren't enough good doctors to go around.
@@lichensclerosussupportnetwork She only focuses on gynecology to help women. I love her. I pay her cash since she doesn't take Medicare. Her name is Carolyn Riley, MD
Cornerstonemd
12222 N Central Expy Ste 140
Dallas, TX 75243
469-801-8480
She has only seen 2 other cases of Lichen Sclerosis other than me. I can say I am being very close to remission today. She says I have responded to the 0.1% clobetasol excellently. Your posts have given me very much help in hand in hand on what I do with ointment. Application instructions of the clobetasol ointment I have gotten from you and I thank you for all the information that Dr Riley did not cover. Your channel is indespensible with my Dr's help. I am on application for only twice a week now. I love you dearly.
Yayyy!!! Thank you for your kind words and the referral. May you continue to heal.
So glad i found this channel! I have been a lone in this journey for years now. I am 54 just stopped having periods 3mnths now, i have fibroids ontop of everything, since my estrogen has lowered, fibroids are shrinking, now i just need to get LS undercontrol, it seemed to flare up more during period, but i realised pads irritated me, and of course heavy longer periods didn't help. I have learned a lot in the little time i found this channel. I learned what to apply, how to apply, and frequency. Thankyou so much!❤❤Wondering if vit. E oil is ok as a moisturizer? Also, i think my diet is important, stress levels and so on. The part that gets me down is not feeling comfortable meeting anyone new, I havnt had a decent physical relationship in years, I feel maybe a new guy would not truly, or honestly understand my delima, and until now, haven't talked about it. anyway, thankyou for this channel.
We're so happy you found us as well! Vit. E oil has worked as an excellent moisturizer for many people. I would also encourage you to start talking to your doctor about topical estrogen if you haven't yet.
You are not alone in worrying about dating. I can tell you the right person for you will understand and make space for you. It's also possible to get to a point where sex is pleasurable again. It can take some work, but many have done it.
We have a new program around helping you have a sexual rebirth. It will help you discover who your new sexual being is because you are a sexual being, even if intercourse is off the table for now.
You can find out more at lssupportnetwork.org/sexyback.
We've also launched registration for our week-long summit, (W)holistic Healing Summit. It's a fantastic program. Check it out at whhs.lssupportnetwork.org.
such a great talk!!!
Thank you!
THANK YOU SO MUCH 🙏🏻 This has been so educational , I Really appreciate these videos ❤️
Glad it was helpful! 🥰🤗
Bless U for this channel💞
Thank you!
Your podcasts are all excellent information - but this was particularly helpful in the breadth of topics covered. It answered some key questions I’ve had. Thank all of you were making this information easy accessible. (And I wish I lived in Tampa so I could make an appt with Dr. Krapf!)
Glad it was helpful! Me too!
I live in Louisiana & oh how I wish we had a Dr. Jill in this area! The docs I’ve been to don’t have a clue! So, if I understand her correctly, you can have LS but not know it till your estrogen level drops like during post menopause.
Completely understand your frustration. We're looking to launch a new program soon where we educate providers so more people have access to quality care. It is possible to have LS and not know it. Many people are asymptomatic until they have a progression in their condition.
I have learned so much from your podcasts! Thank you so much :) I have tried to take a long bath on the days I apply clobetasol. Unfortunately, I get UTIs with baths-no matter how clean my bathtub is :( Any suggestions?
You are so welcome! You can try a sitz bath. Or you can do like me and apply after a long hot shower.
We had a lady at a virtual meetup tell us how she folds a wash cloth and wears it inside her underwear while she showers allowing the wash cloth to soak with water and sit against her skin.
Good luck!
Oh my goodness. This helped so so much. My gyn told me I should feel better in 1-2 weeks!!! So happy to know it can take much longer. No I won’t be so frustrated
Definitely can take longer. Some people take as long as year. Give yourself grace.
So redness does not indicate active LS? I am a male suffering from this disease and it’s hard to find consistent information online
I completely understand. I don't know if it's the same for penile LS, but in vulvar LS, redness can be from scratching, rubbing, contact dermatitis, yeast infection, or a secondary condition. It should be looked at by your provider. I hope you get the care you need.
Thank you for all the informative podcasts. I am 57 and have had LS my entire adult life yet I have never really been educated well until my 2nd surgery (1st one 12/19 for Vulvar Cancer). After my 2nd surgery in Nov. I started doing sitz baths for healing and then continued the baths when restarting Clobetasol. I may be making a mistake though because during recovery I was told to blow dry the vulva for healing and it became a habit. Dr. Krapf says to pat dry so I’m afraid using the blow dryer after my incision has healed may not be the right thing now. Should I just be patting dry and skipping the blow dryer? TIA.
Yes the reason we soak is to soften the skin and open the pores. If you're blow drying it dry the pores are closing back up and it's reducing how much of the steroid gets absorbed. Patting dry is good enough.
Sorry it took so long for you to get quality care. I hope you have continued health.🥰🤗
I firmly believe that it is an autoimmune condition - however, what causes that - especially, when you have nothing like this and no autoimmune conditions in your genetic background (at least as far as I know) Also, I believe that there is MUCH much more of a connection to lack of hormones in women who are post menopausal. I think that there could also be a connection to antibiotic use in post menopausal women (which kills gut health of course) I feel strongly that ALL women over the age of 45 (perimenopausal) should be put on vaginal estradiol and also be evaluated for HRT. I'm not a doctor, I'm just a very focused researcher. In short, I feel hormonal health and gut health are deeply connected to the developement of autoimmune problems - including LS
Thank you. There's much more research that needs to be done to answer these and more questions.
Great podcast, I wonder if medicine can inject the necessary anti inflammatory meds right to the 7th layer and bypass the ointment? Is there such a thing?
Steroid injects are used in hard to treat cases as a last ditch effort to help people get to a place where they can maintain.
Hello there...I been in pain for over 2 years...thinking the doctor said I had sclerosis and hemroids. Yesterday I called to tell her that the meds for this is not working and the secretary told me that I do not have sclerosis and that it is lichen sclerosus. I was shocked. Now I am in severe pain and depressed. What should I do about the pain because the ointment is not working.
So sorry you experienced this. Please check out this resource lssupportnetwork.org/chronic-pain-and-lichen-sclerosus-what-is-going-on/
I was diagnosed with a biopsy for LS 1.5 months ago. I’m 63 post menopausal 14 years. Diagnosed 4 months ago with low estrogen. Presenting symptoms were itching then swollen left vulva. After starting vaginal estrogen the symptoms were worse. Redness moved to perineal and swelling. Fungal and bacterial swabs always negative. No visible signs of white patches. Switched to tablet estrogen and started steroid. The redness moved to anal area. One month after treatment the redness has decreased significantly and I have flare ups every 5-7 days in anal area. Several times it was mentioned redness is not LS…so what are we maybe missing?
In the case of DIU vs control pill occur the same way? With the level of hormone can affect in the symptoms not in the LS.
I'm not sure I understand your question. Can you give me more details?
Can clobetasol cause nerve damage in any way?? Can you ask Dr. Krapf about this? Thanks
I've not seen any indication steroids cause nerve damage. I've talked with Pelvic Health Physical Therapist Ashlie Crewe about persistent pelvic nerve pain, which seems to be an overreaction of the nerves from an initial pain. I encourage you to watch. It's very educational. ua-cam.com/video/CvNPIFBDjl4/v-deo.html&pp=gAQBiAQB
Kathy, do you know if micro cuts in the perineum area are always indicative of LS or can they be from something else like atrophy? I have the micro tares but no other signs for LS…no whiteness.
It could be atrophy but you also don't have to have the white spots to have LS. It can be complicated. Have you tried estrogen or steroids?
I have a question I was diagnosed with LS 5 months ago. I have no itching and the white patches are gone. I have been watching your videos and wanted to thank you for sharing these. Mybquestion is should I have redness on the skin on my bottom ? My skin looks red like a diaper rash. I think I may have applied outside the area thar needs medication could this be the issue? Also, i think i am applying more than the pea size amount that you recommend. My doctor just prescribed the medicine and i was on my own😔was not told to soak just apply meds 2x a week
Thank you for the kind words. You should not have redness. It sounds like you may have developed a skin yeast infection. You'll want to be seen by your provider to confirm and treat. Check out this post. lssupportnetwork.org/do-steroids-cause-yeast-infections-in-people-with-lichen-sclerosus/
How much further into the system does the steroid/ ointment travel? I have seen the damage steroids have done to my husband osteoporosis and the china bone syndrome which he now has. I personally wouldn't put steroids anywhere near my body. What do you say to that?
We've talked about this in part two of this interview. Very small amount gets into the system when used correctly. It's very localized. Check out this video ua-cam.com/video/ZaDDBA2_F74/v-deo.html
Is it normal that steroid eats up your skin to pretty much raw for LS spots or would I need to stop the application if that occurs? Also, is it normal that the LS effected area will appear swollen during treatment as in one part of the vulva side is bigger and the healthy one is normal?
No this is not normal. You may want to have your provider look at you again. You could have been misdiagnosed with LS, have a secondary condition, be using too much steroid, or have an allergy to the steroid. There are options for all these scenarios but you need to get examined by a provider that knows what they're doing. Good luck. 🥰🤗
@@lichensclerosussupportnetwork thank you for this information. I actually have LP which is similar to LS but a bit different. I ended up getting a different steroid prescribed (clobetasol) and this seems to be working much better. It is also not easy to find a provider/gynecologists that knows much about LP/LS in my area...