Thank you for creating this podcast. I really needed to hear this. I was diagnosed on Monday of this week and I have not been able to spit crying yet. Thank you. I hope to come to grips with this soon and can move forward.
Hey Christine. I'm so sorry you have this disease. I know it can be hard to process in the beginning. Knowledge is power. The more you learn the easier it will be to grasp. I encourage you to check out this page on my new website. I think it will help you. lssupport.net/starthere There are resources on that page that will help you start your journey. I also encourage you to join our virtual meetups. You are not alone and the sooner you find your community the easier your journey will be. You can signup on that page or learn more at lssupport.net/connect. I look forward to seeing you. You can always email me as well at kathy@lichensclerosuspodcast.com. 🤗
I’m so glad I took a chance and searched Lichen Sclerosis on TH-cam and found your podcast/channel. I was just diagnosed late last year and it’s gotten worse over a few months. My anal region is impacted and it’s only now starting to reach my vulva area :(
So sorry you have this condition. Have you had a chance to listen to the interview I did with Dr. Jill Krapf on steroid therapy? If not, I highly encourage you to. th-cam.com/video/FdwECxBJIBI/w-d-xo.html
Thank you for the information. It answered one of my questions that I have been wondering about since I was diagnosed 5 months ago-. Are UTI's common with LS? Recurrent UTI"a and vulvar burning presented at the same time so it was so confusing to know which was what. By the time I received my diagnosis my labia minora on one side was partially reabsorbed and I was on a daily dose of antibiotic to keep the UTI"S under control. I was also diagnosed with vaginal atrophy and so vaginal estrogen cream was prescribed along with the steroid ointment. Things have improved a lot but the vulvar irritation/burning is still there some days. It's a process that is for sure. I am really grateful I have found you. Thank you for all you do.
I'm so happy you got some of your questions answered. LS can be an investigative process of trial and error. Have you watched the interview I did with Dr. Jill Krapf? It may answer more questions. th-cam.com/video/FdwECxBJIBI/w-d-xo.html
Thank you so much for your help. You are so supportive and on point about Drs. Have no clue or want to deal with it! I went for my physical and my blood pressure was very high. I was stressed about not having a gynecologist. Mine retired and the wasn’t feeling well about LS so i told her about it she honestly said sorry i know nothing about it! I Expressed i was afraid of getting cancer i told her what i was seeing , which thank you for putting a name to it! Many little blood blisters. She didn’t even exam me. But as part of my physical she exams breasts and anus for lumps. Told me to call one of the 2 doctors that she recommended. They were Gynecologists. Instead of calling i went in person to make an appointment and told the sec. my situation. I never got an appointment and i was told the nurse would call me. Its been days and no calls , what a slap in the face to me. Not even a call to refer me. Thank you for listening and helping us feel heard.
So sorry you had that experience. Unfortunately, it's a version of a story I've heard many times. Have you signed up for the virtual meetups yet? I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on April 3rd. You can signup at lssupport.net/connect. Lots of women find it helpful to connect with women who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. I hope to see you at a meetup but if not I look forward to hearing from you again. You are definitely not alone.
You’re very welcome. Sorry you have this disease but happy you a diagnosis. I encourage you to listen to the recent interview I did with LS Specialist/researcher Dr Jill Krapf on proper steroid application. It’s super important and will set you up for success. Also join our virtual meetups. You can signup at LS support.net/connect for notifications and updates. The next one is today from 2-4 and 7-9 PM EST.
You are so welcome! I encourage you to checkout the Holistic Healing Summit. It’s the largest virtual LS event of the year. We currently have over 30 interactive session planned. holistichealingsummit.live
Hey! Unfortunately, I don't of any organization that hosts local meetups. I host a monthly virtual meetup for ladies with LS. You can signup at lichensclerosuspodcast.com/connect.
I really think mine is from an asthma medicine injection. First, just around the injection site, then around my chest like it was climbing up my chest.Tried to tell my pulmonary Dr what I thought was the problem, this was rejected until I was biopsy and I refused to take the injection ever. Got my prescription changed, then started clabatosol ointment for it and went on for a while. I just got a diagnosis of LP of head and mouth. Looking for lots of information!
I just learned I have LS. Don't know how long I had this, but the clit hood is gone! Wonder how long it takes for that to happen from the beginning? I'm not all that itchy. Lots of white plaque, and it's in a figure 8 around my front and back. I watched everything I can find. Thank you for help on treatments. I watched your TH-cam's before going to Dr. By the time I got there, I think I knew more than she did. I don't feel I need a painful biopsy. It's so clear that it's LS. She wrote in after report that it could be other things, yet the photos are identical to LS! I'm old, but want companionship. I started dreaming of a relationship when I became aware of this! Now fuggetaboutit!
Sorry you got this condition but please don't give up hope. It can be managed and you can still have a healthy and beautiful relationship, including a great sex life. It may take some work but it's doable. Finding a good doctor is a chore sometimes. Have you checked out our provider directory to see if there are any doctors in your area? lssupportnetwork.org/providers A biopsy is not always necessary but some doctors like to have confirmation as there are other conditions that share symptoms. If the steroid is working and you don't feel it's necessary do what feels is right for you. Good luck!
Hey! I'm glad you found me and are able to get the valuable information you need. Yes, medication has been so helpful for me as well. Definitely listen to Lichen Sclerosus Basics if you haven't yet. It will help fill in a lot of blanks. Please feel free to ask me any questions no matter how big or small. 🤗🥰
I was able to stop my fusing with proper steroid application and schedule. It took about two month. I halted it for almost a year but recently have hit a very stressful patch and was thrown into a flare and the fusing started again. It has taken another two months but I've halted it again. I encourage you to listen to the interview I did with Dr. Jill Krapf on proper steroid therapy. th-cam.com/video/eCC8swZqAac/w-d-xo.html&lc=UgwoRbpofV0ocZYv0cx4AaABAg
The steroid ointment the dr prescribed sets me on fire and does not help at all. What now. Is there another medication to soothe and help this condition go into remission? Help
I would really look at getting a second opinion. LS very rarely affects outside of the vulva. There are many other conditions with similar symptoms that do however, such as lichen planus. the best way to know for sure is with a biopsy. If I were in your situation I would try to get one so I could be sure I'm getting the correct treatment. There are secondary line treatments. I encourage you to listen to "The State of Lichen Sclerosus Today with Leia Mitchell". She discusses all the current treatments.
I just been told I have this ,omg the pain is just terrible I just burn from the cream they gave me,been to hospital 2 times in the last month but no help just burns ,
So sorry to hear this. Did they give you cream or ointment? Cream tends to burn because of the alchol in the base. Ointment is better for multiple reasons. I encourage you to listen to two other episodes ASAP to help you get on a road to healing. My interview with Dr. Jill Krapf on proper steroid therapy. th-cam.com/video/eCC8swZqAac/w-d-xo.html And LS Basics th-cam.com/video/xy_WI58-LQE/w-d-xo.html Also when you're ready, I host a free LS virtual support meetup every other Saturday from 2-4 and 7-9 PM EST. You can get more information at lssupport.net/connect. Please feel free to email me if you want to talk more privately. kathy@lssupport.net. You are not alone and this disease can be managed. 🤗
I had this for years,undiagnosed, and my husband just didn’t seem to realize the pain I went through with intercourse. How can you make them realize it’s real!!?
So sorry to hear that. I did an episode just for this. Sit with him and listen to this episode. th-cam.com/video/eE35XkWLLjk/w-d-xo.html Allow him to ask you questions and be open with him about how he can help you. Good luck.
You are so beautiful,a true friend , sharing your life with the rest of us who suffer from LS ❤❤❤
Thank you! 🥰🤗
Thank you for creating this podcast. I really needed to hear this. I was diagnosed on Monday of this week and I have not been able to spit crying yet. Thank you. I hope to come to grips with this soon and can move forward.
Hey Christine. I'm so sorry you have this disease. I know it can be hard to process in the beginning. Knowledge is power. The more you learn the easier it will be to grasp. I encourage you to check out this page on my new website. I think it will help you. lssupport.net/starthere
There are resources on that page that will help you start your journey. I also encourage you to join our virtual meetups. You are not alone and the sooner you find your community the easier your journey will be. You can signup on that page or learn more at lssupport.net/connect. I look forward to seeing you.
You can always email me as well at kathy@lichensclerosuspodcast.com.
🤗
I’m so glad I took a chance and searched Lichen Sclerosis on TH-cam and found your podcast/channel. I was just diagnosed late last year and it’s gotten worse over a few months. My anal region is impacted and it’s only now starting to reach my vulva area :(
So sorry you have this condition. Have you had a chance to listen to the interview I did with Dr. Jill Krapf on steroid therapy? If not, I highly encourage you to. th-cam.com/video/FdwECxBJIBI/w-d-xo.html
Iv tried to email you at both emails but they won’t come up ??
Thank you for the information. It answered one of my questions that I have been wondering about since I was diagnosed 5 months ago-. Are UTI's common with LS? Recurrent UTI"a and vulvar burning presented at the same time so it was so confusing to know which was what. By the time I received my diagnosis my labia minora on one side was partially reabsorbed and I was on a daily dose of antibiotic to keep the UTI"S under control. I was also diagnosed with vaginal atrophy and so vaginal estrogen cream was prescribed along with the steroid ointment. Things have improved a lot but the vulvar irritation/burning is still there some days. It's a process that is for sure. I am really grateful I have found you. Thank you for all you do.
I'm so happy you got some of your questions answered. LS can be an investigative process of trial and error. Have you watched the interview I did with Dr. Jill Krapf? It may answer more questions. th-cam.com/video/FdwECxBJIBI/w-d-xo.html
Thank you so much for your help. You are so supportive and on point about Drs. Have no clue or want to deal with it! I went for my physical and my blood pressure was very high. I was stressed about not having a gynecologist. Mine retired and the wasn’t feeling well about LS so i told her about it she honestly said sorry i know nothing about it! I Expressed i was afraid of getting cancer i told her what i was seeing , which thank you for putting a name to it! Many little blood blisters. She didn’t even exam me. But as part of my physical she exams breasts and anus for lumps. Told me to call one of the 2 doctors that she recommended. They were Gynecologists. Instead of calling i went in person to make an appointment and told the sec. my situation. I never got an appointment and i was told the nurse would call me. Its been days and no calls , what a slap in the face to me. Not even a call to refer me. Thank you for listening and helping us feel heard.
So sorry you had that experience. Unfortunately, it's a version of a story I've heard many times.
Have you signed up for the virtual meetups yet? I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on April 3rd. You can signup at lssupport.net/connect. Lots of women find it helpful to connect with women who understand what they're going through.
It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera.
I hope to see you at a meetup but if not I look forward to hearing from you again. You are definitely not alone.
I want to thank you so much I just found out .and you gave me so much info thank you so much.
You’re very welcome. Sorry you have this disease but happy you a diagnosis. I encourage you to listen to the recent interview I did with LS Specialist/researcher Dr Jill Krapf on proper steroid application. It’s super important and will set you up for success. Also join our virtual meetups. You can signup at LS support.net/connect for notifications and updates. The next one is today from 2-4 and 7-9 PM EST.
thanks for your podcast your a sweetangel
You are so welcome. Thank you for listening. Please let me know if you have any questions.
What has saved me is the fact that my Dr. Prescribed lidocaine cream and it is a great help to deaden the. Itching and pain❤
What about fatigue as a symptom? Have definitely experienced this myself.
LS doesn't cause fatigue but constantly thinking about our condition, and grief, and our genitals, is a lot of mental work that can cause fatigue.
Thank you!!!
You are so welcome! I encourage you to checkout the Holistic Healing Summit. It’s the largest virtual LS event of the year. We currently have over 30 interactive session planned. holistichealingsummit.live
Thankyou
You’re welcome 😊
How do I get in contact with ladys who is in my area with Ls
Hey! Unfortunately, I don't of any organization that hosts local meetups. I host a monthly virtual meetup for ladies with LS. You can signup at lichensclerosuspodcast.com/connect.
Look up facebook groups.
I really think mine is from an asthma medicine injection. First, just around the injection site, then around my chest like it was climbing up my chest.Tried to tell my pulmonary Dr what I thought was the problem, this was rejected until I was biopsy and I refused to take the injection ever. Got my prescription changed, then started clabatosol ointment for it and went on for a while. I just got a diagnosis of LP of head and mouth. Looking for lots of information!
What causes this
It's an autoimmune condition with many possible triggers. There's also a genetic component.
I just learned I have LS. Don't know how long I had this, but the clit hood is gone! Wonder how long it takes for that to happen from the beginning? I'm not all that itchy. Lots of white plaque, and it's in a figure 8 around my front and back.
I watched everything I can find. Thank you for help on treatments. I watched your TH-cam's before going to Dr. By the time I got there, I think I knew more than she did.
I don't feel I need a painful biopsy. It's so clear that it's LS. She wrote in after report that it could be other things, yet the photos are identical to LS!
I'm old, but want companionship. I started dreaming of a relationship when I became aware of this! Now fuggetaboutit!
Sorry you got this condition but please don't give up hope. It can be managed and you can still have a healthy and beautiful relationship, including a great sex life. It may take some work but it's doable.
Finding a good doctor is a chore sometimes. Have you checked out our provider directory to see if there are any doctors in your area?
lssupportnetwork.org/providers
A biopsy is not always necessary but some doctors like to have confirmation as there are other conditions that share symptoms. If the steroid is working and you don't feel it's necessary do what feels is right for you.
Good luck!
Just diagnosed 2weeks ago explains why I have the symptoms you described horrible thank goodness for the ointments 💜💜
Hey! I'm glad you found me and are able to get the valuable information you need. Yes, medication has been so helpful for me as well. Definitely listen to Lichen Sclerosus Basics if you haven't yet. It will help fill in a lot of blanks. Please feel free to ask me any questions no matter how big or small. 🤗🥰
What are the best treatments to stop the fusing ?
I was able to stop my fusing with proper steroid application and schedule. It took about two month. I halted it for almost a year but recently have hit a very stressful patch and was thrown into a flare and the fusing started again. It has taken another two months but I've halted it again. I encourage you to listen to the interview I did with Dr. Jill Krapf on proper steroid therapy. th-cam.com/video/eCC8swZqAac/w-d-xo.html&lc=UgwoRbpofV0ocZYv0cx4AaABAg
@@LichenSclerosusPodcast Thank you very much!
The steroid ointment the dr prescribed sets me on fire and does not help at all. What now. Is there another medication to soothe and help this condition go into remission? Help
I would really look at getting a second opinion. LS very rarely affects outside of the vulva. There are many other conditions with similar symptoms that do however, such as lichen planus. the best way to know for sure is with a biopsy. If I were in your situation I would try to get one so I could be sure I'm getting the correct treatment. There are secondary line treatments. I encourage you to listen to "The State of Lichen Sclerosus Today with Leia Mitchell". She discusses all the current treatments.
@@LichenSclerosusPodcast ii have ls 4 21 years had vuval cancer nerve wrecking learned 2 live with it nothing is impossible with God
One specialist told me to use HRT cream twice a week,instead of the Demol ointment and this has helped so much.
I just been told I have this ,omg the pain is just terrible I just burn from the cream they gave me,been to hospital 2 times in the last month but no help just burns ,
So sorry to hear this. Did they give you cream or ointment? Cream tends to burn because of the alchol in the base. Ointment is better for multiple reasons.
I encourage you to listen to two other episodes ASAP to help you get on a road to healing. My interview with Dr. Jill Krapf on proper steroid therapy. th-cam.com/video/eCC8swZqAac/w-d-xo.html And LS Basics th-cam.com/video/xy_WI58-LQE/w-d-xo.html
Also when you're ready, I host a free LS virtual support meetup every other Saturday from 2-4 and 7-9 PM EST. You can get more information at lssupport.net/connect.
Please feel free to email me if you want to talk more privately. kathy@lssupport.net. You are not alone and this disease can be managed. 🤗
this is a great podcast I use Emuaid in the white and blue jar and i am so much better no more pain
Thanks! I'm so happy you've found what works for you. 🤗
What about scabs else here on your body
LS presents as white shine thin looking skin on other parts of the body. It does not scab. Have you been to a doctor?
I had this for years,undiagnosed, and my husband just didn’t seem to realize the pain I went through with intercourse. How can you make them realize it’s real!!?
So sorry to hear that. I did an episode just for this. Sit with him and listen to this episode. th-cam.com/video/eE35XkWLLjk/w-d-xo.html Allow him to ask you questions and be open with him about how he can help you. Good luck.