1. < Women's Health
Profile picture for Kitten92

Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

Is anyone out there dealing with this disease? I am currently using a compound ointment that my oncologist prescribed but I'm looking for possible lazer treatments or anything else that might now be available.

Interested in more discussions like this? Go to the Women's Health Support Group.

Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 9 4:51pm
In reply to @mar1234 "I am using clobetasol 0.5 ointment. Not to keen on a steroid treatment but helps when..." + (show)
Profile picture for mar1234 @mar1234

I am using clobetasol 0.5 ointment. Not to keen on a steroid treatment but helps when l am itchy and inflamed. I am 73 and l know it is caused from post menopausal. I use coconut oil or just started with Vaseline healing jelly for my valve. I only wear white cotton underwear and night gowns. Hopefully l am okay with what l am doing. I do check all the time for any changes and l see a gyno and will be seeing a dermatologist this Friday... about the LS. He might have something else to add about my LS. Oh l try not to use toilet paper, just Kleenex that l do not flush in the toilet. It seems to be better for wiping. I also use water to flush my private part. So far so good no flare-ups. I will keep you posted and if there is anything else you can for me to do.. thanks for listening....MH

Jump to this post

@mar1234, welcome. I moved your helpful post to this discussion to help you connect with other members:
- Lichen Sclerosus: Any other women dealing with this disease? https://connect.mayoclinic.org/discussion/lichen-schlerosus/

You may also be interested in this related discussion:
- Anyone have success with treatment for vaginal Lichen Sclerosus?https://connect.mayoclinic.org/discussion/does-anyone-have-any-success-with-treatment-vaginal-lichen-sclerosus/

REPLY
Profile picture for kristine31
kristine31 | @kristine31 | Dec 10 10:32am

I'm taking 3 different creams and Methotrexate and folic acid been in remission for 6 months knock on wood that it stays dormant.

REPLY
1 reply
Profile picture for mar1234
mar1234 | @mar1234 | Dec 11 2:25pm
In reply to @kristine31 "I'm taking 3 different creams and Methotrexate and folic acid been in remission for 6 months..." + (show)
Profile picture for kristine31 @kristine31

I'm taking 3 different creams and Methotrexate and folic acid been in remission for 6 months knock on wood that it stays dormant.

Jump to this post

@kristine31
I am seen a dermo docter on Friday, will let you know what he suggests to take!

REPLY
Profile picture for shelleytheturtle
shelleytheturtle | @shelleytheturtle | Dec 11 8:29pm

A lady named Lara got diagnosed with lichen schlerosus around 2008, later went on a low fat, raw food diet and after 10 months (around 2012) had no more symptoms of lichen schlerosus and hasn't had any since, as at 2025.

If that is only "in remission", 13 years of remission is still good. The video is called 'She Healed “Incurable” Disease with Raw Foods & Faith | LDS Fruitarian Testimony' on YT by 'The Raw Life Health Show'.

REPLY
1 reply
Profile picture for cocok
cocok | @cocok | Dec 12 12:13pm
In reply to @shelleytheturtle "A lady named Lara got diagnosed with lichen schlerosus around 2008, later went on a low..." + (show)
Profile picture for shelleytheturtle @shelleytheturtle

A lady named Lara got diagnosed with lichen schlerosus around 2008, later went on a low fat, raw food diet and after 10 months (around 2012) had no more symptoms of lichen schlerosus and hasn't had any since, as at 2025.

If that is only "in remission", 13 years of remission is still good. The video is called 'She Healed “Incurable” Disease with Raw Foods & Faith | LDS Fruitarian Testimony' on YT by 'The Raw Life Health Show'.

Jump to this post

@shelleytheturtle i would like to know more about the foods to eat . I have been dealing with this since 2018.
Thanks

REPLY
Profile picture for ntownshend
ntownshend | @ntownshend | 6 days ago
In reply to @joybringer1 "I have had lichen sclerosis for 10 years. I was finally diagnosed by the fourth gynecologist..." + (show)
Profile picture for joybringer1 @joybringer1

I have had lichen sclerosis for 10 years. I was finally diagnosed by the fourth gynecologist I found. I see her about every two months. My labia minor are all but gone. During my last visit, she took a vulva biopsy. I am awaiting results. My perineum and close by regions are covered in white. For now, I am to only apply Vaseline and still use Premarin twice weekly. At night I take 25 mg. of Amitriptylin. I tried the Mona Lisa, but only once. It is very expensive and not for me. I have come to the conclusion there is no hope for me. Sure, I have tried all the meds and compounded mixtures, but no help right now. @joybringer1

Jump to this post

@joybringer1
Have you tried Vagifem and Clobetasol? This combination has “cured” me - at least for now!

REPLY
1 reply
Profile picture for joybringer1
joybringer1 | @joybringer1 | 6 days ago
In reply to @ntownshend "@joybringer1 Have you tried Vagifem and Clobetasol? This combination has “cured” me - at least for..." + (show)
Profile picture for ntownshend @ntownshend

@joybringer1
Have you tried Vagifem and Clobetasol? This combination has “cured” me - at least for now!

Jump to this post

@ntownshend, I use Clobetasol twice a week and Premarin every other day. I am glad you are well, at least for now. It is an ongoing battle and I am glad to hear of others' success stories. I still must numb every 3 hours or so or the burning is horrific. That is a compounded mixture for me of 10% Lidocaine in Petrolatum (Vaseline). The last time I saw my gyn she told me I have vulvodynia. It feels the same as LS to me. Both burn. I have no expectation of ever saying I am cured. Thanks for sharing your story. With all good wishes, @joybringer1

REPLY
Profile picture for barbarasolinski
barbarasolinski | @barbarasolinski | 5 days ago

I have lichen sclerosus since diagnosis in 2019. I did some reading and found someone recommended evening Primrose oil capsules. It seems to keep symptoms away. I tried using clobetasol but found out I was allergic to something in it, so I don't use it. Best of luck in finding something that works for you!

REPLY
View MoreView Less
Please sign in or register to post a reply.