1. < Autoimmune Diseases

Can anyone provide their care plan for lichen sclerosus?

Posted by rose66 @rose66, 5 days ago

Hi,
I see a local dermatologist to manage my symptoms. I had a biopsy a few months ago to confirm my diagnosis.I am using a cream steroid now 2x a week for maintenance ,and more cream steroids when I have a flare up.
My symptoms now include very smelly urine with bits of tissue(?) in the toilet, and low pelvic pain. I feel like this is progressing.

Can you share your experiences with this disease and your symptom progression and who manages your care?
I have read that 2-4% of cases can become squamous cell cancer, as a colon cancer survivor this isn't good news .
Thank You.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | 5 days ago

@rose66 Welcome to Mayo Clinic Connect! We’re glad you found us! You might want to let your PCP know right away. You could have a bad urinary system infection and should have it checked out. Can you call first thing tomorrow?

REPLY
1 reply
ronag | @ronag | 4 days ago

Welcome to this group. I can understand your concerns. I've found it very helpful having a group of peers with whom to discuss issues. I was diagnosed 2 years ago. Initially I was using the clobetasol daily. I'm now on the twice a week regimen and, according to my doctor (an OB/GYN), am in remission. Before applying I soak the area to soften the skin and allow for better absorption of the ointment (not cream). I was told to use a pea-sized amount of the ointment. I spend a couple of minutes gently rubbing it in. The doctor also put me on an estrogen cream twice weekly. She was never very specific in any of her instructions to me, but I've found a lot of helpful information and assistance through the Lichen Sclerosis Support Network (LSSN). Good luck with both the LS and your urinary issues.

REPLY
2 replies
rose66 | @rose66 | 4 days ago
In reply to @becsbuddy "@rose66 Welcome to Mayo Clinic Connect! We’re glad you found us! You might want to let..." + (show)
@becsbuddy

@rose66 Welcome to Mayo Clinic Connect! We’re glad you found us! You might want to let your PCP know right away. You could have a bad urinary system infection and should have it checked out. Can you call first thing tomorrow?

Jump to this post

Thank you for responding, I sent a note to urology this morning.
Dawn

REPLY
rashida | @rashida | 3 days ago
In reply to @ronag "Welcome to this group. I can understand your concerns. I've found it very helpful having a..." + (show)
@ronag

Welcome to this group. I can understand your concerns. I've found it very helpful having a group of peers with whom to discuss issues. I was diagnosed 2 years ago. Initially I was using the clobetasol daily. I'm now on the twice a week regimen and, according to my doctor (an OB/GYN), am in remission. Before applying I soak the area to soften the skin and allow for better absorption of the ointment (not cream). I was told to use a pea-sized amount of the ointment. I spend a couple of minutes gently rubbing it in. The doctor also put me on an estrogen cream twice weekly. She was never very specific in any of her instructions to me, but I've found a lot of helpful information and assistance through the Lichen Sclerosis Support Network (LSSN). Good luck with both the LS and your urinary issues.

Jump to this post

@ronag @rose66 I used Clobetasol ointment daily when first diagnosed too, and now use it only when I have a flare.

@ronag You are right … Clobetasol ointment works better on me too than cream or gel for lichen sclerosis - although for oral lichen planus I prefer a gel (not cream or ointment). I use Lyderm gel for that.

By the way, I just came across this recall notice for Taro-Clobetasol:
https://www.drugs.com/fda/taro-pharmaceuticals-issues-voluntary-nationwide-recall-clobetasol-propionate-ointment-usp-0-05-60-14500.html

REPLY
veronicamac | @veronicamac | 3 days ago
In reply to @ronag "Welcome to this group. I can understand your concerns. I've found it very helpful having a..." + (show)
@ronag

Welcome to this group. I can understand your concerns. I've found it very helpful having a group of peers with whom to discuss issues. I was diagnosed 2 years ago. Initially I was using the clobetasol daily. I'm now on the twice a week regimen and, according to my doctor (an OB/GYN), am in remission. Before applying I soak the area to soften the skin and allow for better absorption of the ointment (not cream). I was told to use a pea-sized amount of the ointment. I spend a couple of minutes gently rubbing it in. The doctor also put me on an estrogen cream twice weekly. She was never very specific in any of her instructions to me, but I've found a lot of helpful information and assistance through the Lichen Sclerosis Support Network (LSSN). Good luck with both the LS and your urinary issues.

Jump to this post

It took my doctor 6 months of constant pain to send me to a dermtologist to get my diagnoses of lichen sclerosis. I was prescribed Dermovate Cream to apply nightly for a few weeks and thereafter given estrogen cream nightly for a couple of weeks then twice weekly to remain on as a maintenance to prevent a reoccurance. I did not have any problems for two years. Then I decided to stop the estrogen cream but the lichen sclerosis symptoms returned so i quickly started on estrogen again. i haven't had any further problems.

REPLY
Please sign in or register to post a reply.