So far the LS team at Beth Isreal Boston has never even mentioned any type of laser. You have given me more information about LS then any MD or RNP in 23 years. Thank you.
It may be because it's not approved as a treatment at this stage, but it can be a helpful adjunct therapy for some (reviews are mixed on the community with respect to laser). Our philosophy at LSSN is to present evidence-based information so people can make informed decisions about their healthcare plan.
@@lichensclerosussupportnetwork They seem to be very reactionary. They haven’t in 23 years suggested using a mirror and or camera to monitor the skin, only recommend Vaseline for lubricants, no discussion of use of dilators or pelvic floor PT. When I bring up painful sex they giggle and say but there is so much more that you can do. They look say ok no hands on exam for ruffness no photo for the chart unless you make a point of asking and come back when you want. Meanwhile they are booked up for at least 6 months and there is no one at the desk to book the appointment. You have to call and wait for a return call with the appointment scheduled day and time. I bought and paid a plumber to install a bidet attachment on my toilet. I told them that I had done this and the response was “oh la de da da” no educational materials no support groups totally a cold devalued experience
So sorry you're getting this level of treatment. Please check out our blogs for even more information. lssupportnetwork.org/blog Unfortunately it often falls on us to educate and advocate for ourselves to get what we need and deserve. We're working to change this but it will take time. 🥰🤗
So far the LS team at Beth Isreal Boston has never even mentioned any type of laser. You have given me more information about LS then any MD or RNP in 23 years. Thank you.
It may be because it's not approved as a treatment at this stage, but it can be a helpful adjunct therapy for some (reviews are mixed on the community with respect to laser). Our philosophy at LSSN is to present evidence-based information so people can make informed decisions about their healthcare plan.
@@lichensclerosussupportnetwork They seem to be very reactionary. They haven’t in 23 years suggested using a mirror and or camera to monitor the skin, only recommend Vaseline for lubricants, no discussion of use of dilators or pelvic floor PT.
When I bring up painful sex they giggle and say but there is so much more that you can do. They look say ok no hands on exam for ruffness no photo for the chart unless you make a point of asking and come back when you want. Meanwhile they are booked up for at least 6 months and there is no one at the desk to book the appointment. You have to call and wait for a return call with the appointment scheduled day and time. I bought and paid a plumber to install a bidet attachment on my toilet. I told them that I had done this and the response was “oh la de da da” no educational materials no support groups totally a cold devalued experience
So sorry you're getting this level of treatment. Please check out our blogs for even more information. lssupportnetwork.org/blog Unfortunately it often falls on us to educate and advocate for ourselves to get what we need and deserve. We're working to change this but it will take time. 🥰🤗
I did povidone rinse,which I tried on my own.
I don't intensely burn anymore,after 8 years and no help
Not familiar with this rinse, but happy you do not experience any more burning.