New to LS - start here

Hi all

I've just joined tonight. Not really sure if this patient site is UK based or global. I don't suppose it really matters.

Although I came on here looking for some help really, I can see the LS forum doesn't appear to be all that busy and many people are asking for help and not getting too many answers.

It'd take me ages to write everything about my experience with LS so I just wanted to say that if anyone would like a bit of help with anything then I'll come on here often and try to answer any questions. It's very scary looking at things on the Internet and my heart goes out to anyone young who has just been diagnosed and is freaking out.

The Internet and forums are an amazing source of help and support but please remember this.. Every single person is different. Some things work for some people, other things work for others.

I was diagnosed with LS from a biopsy when I was about 21. I'm now 47. Sometimes I can go for three or four years without symptoms. The main thing I've realised is that I have to have a virtually sugar free diet as this condition makes you more prone to yeast infections. Once I get a yeast infection it can take 1 or 2 weeks or sometimes a couple of months to fix. After it's gone it often takes six months to a year for the LS to get back into "remission" again. So, looking after yourself when you have LS should be a lifestyle.

I use hydromol bath shower emollient to wash with, Dermovate then trimovate cream when I get a flare up. Alpha keri oil or organic coconut oil for moisturiser/barrier. Sometimes when I'm in remission for years I don't use anything at all. Only washing with the hydromol

Please stay positive and look after yourself

I'll stay in touch with this site and try and answer some questions

Welcome. Here's my experience of LS, based on a chart a few of us worked up for a potential survey. Anyone who feels like it can copy-paste them and edit in their replies. Or just tell their story!

How long have you had a diagnosis of LS? Age 53

Do you suspect that you have had this for much longer? no

Is it currently under control? flare-up now; it's brutal

When did the irritation start? Age 51

Has the area always been irritable? Some remissions for years at a time? no

Are you suffering a flare at the moment? Yes

If so, can you attribute the cause to anything specific? No

Do you suspect that other members of your family may have had/have LS? No

Do you have any other skin conditions along with the LS? No but my family has different types id autoimmune problems

Describe your skin type: fair

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? No

Have you been tested for high cholesterol? yes, but cholesterol is normal

Do you suffer from high blood pressure? No

Statins? No

Diet and exercise? working on healthier diet and exercise

Do you suffer from high blood pressure? No

If so are you being treated for this? N/A

Do you suffer from low blood pressure? No

If so are you being treated for this? N/A

Do you suffer from anxiety? yes

Have you taken steps to reduce your stress? Yes

If so what have you done? journaling, walking, reading, sleeping enough,

Do you have a flare-up of LS if something is causing you stress? sometimes

Have you had surgery related to LS? No

Biopsy: Yes

Have you experienced other surgery? endometrial ablation; ovary removal

Episiotomy: Yes

Please list any of the prescribed topical creams you use currently

Dermovate (Clobetasol)

Emollients: no

Barrier creams: Desitin

Alternative treatments:

What sort of products do you avoid when cleaning the area? Scented soaps

When do you wash? morning

How do you dry yourself? Towel

Do you wash in hot or cold water? Warm

Do you dread having a poo? No What happens? N/A

Does pee sting you? yea What do you do about it? not sure what to do

What can you no longer wear? now realizing that certain types of clothes will irritate the area

What do you now wear? Loose cotton panties, loose trousers (looser at home)

Do any foods seem to make the LS worse? not sure

Is this discomfort on already damaged skin? yes easily tears, burns, itches

I have dealt with lichen for over 4 yrs. one day i thought i should try the PRP injections . about a month after getting it my symptoms stopped. its been over a year symptom free. this has really changed my life!

I was diagnosed a couple of weeks ago. I was mostly asymptomatic, but I went to an OB/GYN appointment. My doctor caught it. I'm so incredibly glad I switched to her from another OB/GYN.

She noticed it, asked me if I'd had any symptoms. I told her that I did have pain and itching on my perineum.

I have type 1 diabetes. In my 30s I had a wave of yeast infections, which are common because type 1s have more sugar in our systems. After some research and trial and error, I discovered that the vagina is mildly acidic. And figured a diluted solution of ACV might help. It did. I didn't have yeast infections for years between using that to make sure my vaginal pH was in the right range and making sure I was eating probiotic foods and taking a probiotic supplement.

She took a couple of pictures, consulted a dermatologist who confirmed that I has LS. I think because of all the other factors, she didn't feel a biopsy was needed. My endocrinologist started me on hormone replacement therapy before my periods ended (there is research that shows starting it before your periods end is better for long term health). I'm past the average age of menopause, which is 52. I probably wouldn't be bleeding any more if I weren't on HRT. I also don't bleed monthly anymore, so there is a change even with hormone supplements. I have two other autoimmune disorders too.

I'm now on a high dose topical steroid. My pharmacy unilaterally decided that instead of 60 grams of ointment, they'd just swap that for 15 grams of cream. With this being a new prescription, I had no clue until I realized I was running out of cream. Then I figured it out, and got things fixed.

I have a follow up with my OB/GYN in about 20 days, so we'll see how it goes. From the research I've done so far, it seems like the majority of women respond well to steroid treatment. I hope the odds are in my favor and that it works for me too. If not, I'm doing a bit of reading every few days on it, to learn more.

I'm glad that I found you all. Thanks for all the resources!

I'm new here, I believe I have LS. Have not been to the doc yet. I have paled skin on inner sides of labia majora, and now what they call those tiny porcelain white spots or plaques on top of the paled skin areas. About 5 in a row on one side and now one on the other side. The skin is smooth for the most part from what I can see. I've read through the threads and have heard people talk about sores. Well these white spots are sore. Hurts when I wipe. But not red open wounds. If it weren't for those, I might not have realized the pale color down there. Not much in the way of itch. I would like to know has anyone else encountered the small white papules or plaques. And has anyone healed them? I'm buying and trying everything I possibly can that I seen mentioned on here. I'm tempted to try and cut one of those papules off to see what happens, but don't want to get myself in trouble. I'm also wondering if 2.5% cortisone ointment can be used. I hate going to the dr for things that they can't help with. Thank you.

I was diagnosed around age 58, and now 70. Has usually been manageable with ointments. I have had a flare up happening for a month and have used so many ointments every day, alternating days, sticking with one for a few days and I think it has suppressed itching but now so raw. (clobetasol, betamethason, tacrolimus) Baths seem to give best relief, but with knee issues getting up and down in tub has been a challenge. Still working on it and wish you all success with your LS issues.

hi i have suffered with ls for a few years now i am 43 and cant wait til my period stops completely as when ime due to start the time of the month which is around now ime clawing myself to bits as it is so painful my 10 year old little girl is always telling me to stop as it's disgusting and I tell her I can't help it she says go back the Dr's mum but I am to embarrassed.

Hi, i have been recently diagnised with LS and i appreciate the resources you have listed