Mayo Clinic Connect
Anything out there that works other than steriods
Liked by kellyj2b
Yes sue225, it was prescribed to help with symptoms of LS, as I was already using the steriod dermovate, but had to recently up it to every day twice for 10 days as the 3 times a week wasnt working,the burning and itching caused alot of discomfort. Doctor hopes it may help with that, some muscle aches and waking up to go for pee every night sometimes twice per night, has been more earlier into this problem. Been taking the amitriptyline for 12 nights now, first 4 nights were great, then by 7th night started to feel quite off, they say any side effects should wear off soon, so hoping things may settle soon. Not sure if doctor wants me to carry on with tablets for a longer period or just for the 6-8weeks.
Jump to this post
I too have LS and use clobetasol and estrogen cream. Could you please share the amitriptyline dose you are taking? I want to discuss adding that with my gyn.
Also, wanted to mention- I often use a squeeze bottle filled with water To gently rinse after urination- it has helped reduce external burning.
Liked by Becky, Volunteer Mentor
Sonya_nc I was told to take 1-2 tablets at night, but have kept it to one per night so far. I occasionally use a portable biday to go on top of the toilet and use bicarbonate soda in warm water, it seems to help with the itch..My biggest problem with this condition is when I suffer flare ups (quite often) it leaves me feeling really off, and really dont feel like doing anything.
Coconut Oil has been very helpful to me with the burning. It is very healing. RET18
Liked by sue225
I have had lichen sclerosis for over 10 years. My gynecologist advises me to use Halobetasol twice a week and Premarin twice a week; however when flares occur I am advised to use Halobetasol twice a day for two weeks, then once a day for two weeks, and then once every other day. Then it is back to maintenance level. I first used Liidocaine and Prilocaine to numb the area, then she changed it to just Lidocaine. I am now using a compounded mixture to numb. None of it seems to really work. I seem to go from one flare to the next with only a few days in between flares. I am in a great amount of pain. I put ice packs on my vulva for 20 minutes at a time. This disease has ruined my life. I cannot make love to my husband and it breaks my heart. At one point, my gynecologist prescribed Prednisone. I hated the side effects from that. I think she is out of ideas. I need to see her, but I wrecked my car and am not going to ask my husband to drive me to her. I live in the Kansas City area. If anyone wants the name of my gynecologist I would be happy to tell you. Any advice is welcome. I feel so sorry for all of you who have this dreadful disease. Thanks for any help you can suggest.
I’m sorry you are dealing with this. It’s life altering. I am finally in a better place… my current regimen: -using liquid organic coconut oil externally each night after showering, -using a compounded formulation of estrogen twice a week and -clobetasol ointment as needed which is now, rarely! When my issues started, I was told to use clobetisol every day- I had so much irritation and dryness- honestly, the coconut oil and the compounded estrogen has made a world of difference for me. I keep the clobetisol ointment handy, but mercifully have not needed it in almost two months!
Hi everyone. I was told I "most probably" have this and am now asking for a biopsy. I have other autoimmune issues but this one came out of left field. What is our risk of cancer? I didn't see any other pages on this…I would love your advice and knowledge. Is this really an autoimmune disease?
What symptoms, ect…I have had intense burning and itching for months, just went into Mayo yesterday and was told there are some things were "folded in" but not much explained…given a pamplet. I wish I had asked more questions, now…
I was given a steriod, used it yesterday and it increased the burning…Please share your experiences with me, if you don't mind.
I read that it is rare disease (I already have two others) ugh. Where do you get treated? Derm? Gyne?
Any help is much appreciated, thank you in advance!
Both gynecologists and dermatologists can treat lichen sclerosis. Originally, it was my gynecologist who diagnosed my lichen sclerosis. By not using the steroid, clobetasol, because it caused stinging, it got much much worse. My gynecologist who is practicing less now, (I am 65 and this was diagnosed in my early 30's), referred me on to a new gynecologist who sees many women with lichen sclerosis. There are a few other steroid ointments you can try and sometimes compounded as a cream as opposed to a gel consistency works better in terms of the burning. I know use my clobetasol religiously and there has been some improvement and it no longer stings as much. It is definitely an autoimmune condition and doing nothing is not an option: it will get worse. In addition to the clobetasol, you should use coconut oil or olive oil or crisco shortening on the area for dryness. There is a risk of cancer of the vulva, not sure what it is but I'm sure that statistic is easy to find and/or the gynecologist would know. Oh, it's not really all that rare. I also have a other autoimmune conditions.
Thanks Sue, your input was good to know. I am going to talk to my derm next week also. I am advocating for the biopsy to be sure…
I mentioned to the provider in email today that it burns using the steriod…Compounding as a cream is a good idea…
Yes, had the biopsy many years ago. Interestingly at that time (early days) biopsy was inconclusive. My gynecologist was certain 30+ years ago that it was l.s. and she was right. However, as the years progressed, it was no longer necessary for a biopsy.
version 184.108.40.206.3.2Page loaded in 0.752 seconds