New to LS - start here

Hello everyone! I was formally diagnosed just over a year ago but have been suffering with Lichen Sclerosus for several years prior. The itching, burning, stinging and total loss of my labia minors almost made me have a mental breakdown. Then my 24 yr old daughter said to me,"mom, porn stars pay thousands of dollars to get theirs removed by choice! LOL! And I started doing tons of research and filling myself with knowledge about the disease and how it was affecting me. First thing I did was buy lots of 100% cotton underwear and

Frida Mom Upside Down Peri Bottle. My Dr. prescribed steroid ointment which I use religiously 1x weekly VERY VERY sparingly. You should not be able to feel or see that you have used it-use that little. Using more will cause burning and further irritation. I use a solution of 1tsp of borax dissolved in hot water then cooled (about 8 oz) in my peri bottle every night at bedtime. More often if itching comes up. Every other time after I go to the toilet I alternate Emu oil which thickens skin and heals at a cellular level and organic glycerin which keeps me all soft and not dried out down there. The borax solution also keeps yeast at bay which I am prone to. At the beginning, before I had it under control and had abrasions from night scratching and tears from wiping etc I used Terrasil Antibacterial skin repair ointment which is amazing for healing and everyone should have in their home. It is pricey but a little goes a long way. I hope to learn even more here and pray that maybe my journey may offer help to someone newly diagnosed with this disease.

Hello thank you for posting this. I am 26 and Have been diagnosed with LS. It started a month ago.. I lost half my right side and I had been watching it. With in 3 weeks I lost both my labia's. I now only have some around my clitoris. I have been under extreme amount of stress and my vitiman D levels were at 15.. So my sex drive was like 0 for a few months before all this. I also had been suffering from extreme depression! And threw all this my amazing supporting BF..... Has stuck by my side and has been doing everything to help. I was so upset and scared to tell him... But he said no matter what we will get threw it together. So that has helped me in my self confidence as well. I have always had problems with sex and so finally finding this out has made me almost relived... Cause I now has a cause for everything. He went with me to my doctors were she diagnosed me with LS. I have to use a sterioid cream for a year 2x a day... Then after that I can see if I can go to once a day for a year after that. I am having a hard time processing everything but I know it will be okay.

Well hey everyone! I'm not 100% that I have LS yet. Saw dermatologist today and she is convinced that it is "at least LS" but also suggested Morphea and is trying to rule out Systemic Lupus. I am just trying to wrap my head around this because I don't have any itching at all. I haven't had any pain or irritation or itching on any of the areas. I have severe joint pain. I noticed it first on my breasts, then went to abdomen and then genital area. I now have these white (hard & scaley) areas on my legs and a few on my back. When my PC saw it he said he knew it was auto-immune (I also have ulcerative colits and have for many years) but didn't feel like that it was related to that. I ignored it for a little bit, maybe two months because I didn't have any discomfort and now I am trying to do research on what this is while waiting on the blood work to come back. She also didn't biopsy it today because of the steroid use. Does this sound similar or ring true with any of you?

Hi, I'm so pleased to have found this forum!

so much support and advice, been reading the posts all weekend and learnt some new things! Here's my LS story, i've had itching and soreness since around the time i started my period, plucked up the courage in my teens to go to the doc and periodically since then until finally demanded referral and was diagnosed by Gynie who took one look and knew it was LS and i cried because i was so relieved to be in safe hands. Still not got a handle on it since then but i also have IBS symptoms and thrush flareups so can he hard to know whats going on!

How long have you had a diagnosis of LS? Age around age 28 (now 32)

Do you suspect that you have had this for much longer? since i was 13/14 but often thought to be thrush, even hemeroids and worms once (on account of admitting to my itchy back end- stopped doing so for a good while after)

Is it currently under control? No, it never really is

When did the irritation start? around time i started period

Has the area always been irritable? yes, splitting common, in my younger years sore during sex, blood blisters from itching in the past too.

Are you suffering a flare at the moment? Yes (july 2020)

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 generally sensitive allergic skin

Describe your skin type: pale and sensitive, do not tan

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

Have you been tested for high cholesterol? No

Do you suffer from high blood pressure? N/A

Statins? N/A

Diet and exercise? Healthy most of the time, walk the dog

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? No but sometimes low moods

Have you taken steps to reduce your stress? Yes

If so what have you done? gardening, crafts

Do you have a flare-up of LS if something is causing you stress? Not sure

Have you had surgery related to LS? No

Biopsy: No

Have you experienced other surgery?

Episiotomy: Yes

Please list any of the prescribed topical creams you use currently

Dermovate (Clobetasol)

Emollients: hydromol liquid

Barrier creams: oilatum (solid)

Alternative treatments: none

What sort of products do you avoid when cleaning the area? Soap, scents, I clean area with the hydromol liquid or solid emollient

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? Yes if constipated

happens? skin splits and bleeds

Does pee sting you? No What do you do about it? N/A

What can you no longer wear? tight underwear, and it needs to be cotton

What do you now wear? Loose cotton trousers and no underwear (anything goes on lockdown!)

Do any foods seem to make the LS worse? alcohol- particularly wine!

Is this discomfort on already damaged skin? i dont understand the question

Good afternoon, Emis. I'm so glad to have found this site as I was diagnosed with Lichen Sclerosus on 06/10/20 and currently undergoing treatment. I'm 73 so went to my dermatologist re a skin disorder that I was curious about and after a biopsy, it was confirmed I had LS. I've been researching a lot about it and was having more serious skin issues in the last week so ultimately found this group . I was prescribed Clobetasol which my insurance didn't cover and couldn't afford so my doctor prescribed Betamethasone Dipropionate Ointment which doesn't seem to be working all that much. My 3-wk followup is coming up so really hope to find out what's causing all my issues. I tried to copy and paste my answers to the questions on original post but was not able to copy/paste for some reason. Looking forward to reading all the literature available here.

How long have you had a diagnosis of LS? Age 68; 16 years

Do you suspect that you have had this for much longer? No -- 2 years post hysterectomy

Is it currently under control? Pretty much

When did the irritation start? Age 52

Has the area always been irritable? Some remissions for years at a time

Are you suffering a flare at the moment? Yes (09/2020)

If so, can you attribute the cause to anything specific? Yes: TIDE laundry detergent, generic CPO 0.05%

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? very dry skin

Describe your skin type: Fair, do not burn easily

Do you suffer from an autoimmune disorder: 5 of 8 Lupus blood antigens

Have you been tested for high cholesterol? Yes, elevated triglycerides more relevant

Do you suffer from high blood pressure? No

Statins? No

Diet and exercise? Healthy diet, regular exercise

Do you suffer from low blood pressure? No

Restless leg syndrome since teen; generic klonopin 0.5 mg at bedtime (19 years)

Do you suffer from anxiety? No

Have you taken steps to reduce your stress? Yes

If so what have you done?

Meditation, tai chi, needlework, crochet, walking, reformer pilates, yoga, reading--- concentrated seminary courses, play with grandchildren, sewing, clay

Do you have a flare-up of LS if something is causing you stress? No

Have you had surgery related to LS? No

Biopsy: Yes, 16 years ageo

Have you experienced other surgery? ---4; severe endometriosis

Episiotomy: Yes

Please list any of the prescribed topical creams you use currently: generic Clobetasol

Emollients: Herbal olive oil - based ointment, herbal coconut oil/beeswax cream,

Barrier creams: white zinc and castor oil, fermented papaya ointment

Alternative treatments: Shiatsu massage for stress, monthly, infrared sauna, vibration plate

What sort of products do you avoid when cleaning the area? Soap, scents

When do you wash? Before bedtime

How do you dry yourself? no die white cloth dinner napkin, newborn baby cotton wash cloth

Do you wash in hot or cold water? Warm

Do you dread having a poo? No... constipation is an enemy, avoid, eat fiber!

Does pee sting you? urethra thickening so feels like voiding thru straw. What do you do about it? N/A

What can you no longer wear? jeans, used to live in yoga pants, not so much now

What do you now wear? Loose cotton bikini under ware when out, at home no under ware, maxie cotton or linen dresses. Have explored silk boxer under ware but $$$ prohibits at this point

SEX: understanding husband of 42 years, cannot occur during flare!!! Be aware LS is treated differently in USA if you declare sexually inactivity. My specialist verbalized squamous cell cancer prevention is only concern if sexually inactive. So bad!!!!

Do any foods seem to make the LS worse? Sugar, gluten, dairy, probably chocolate 😦

Is this discomfort on already damaged skin? most discomfort prior to white infiltration for me is burning and paper cut sensation. i am currently inflamed clitoris to gluteal cleft. White infiltrates 20%, 10% clitoris entrapment. Suspect laundry detergent trigger. Am returning to All Clear HE for all laundry. We do test our triggers! Management is an added expense to tight CV-19 budgets.

Best friend: electric heated biobibet... warm water rinse after every pee.

at last some support

hello, new user and recently diagnosed. But as many have mentioned, most probably had this much longer and not accurately diagnosed. Sometime in June (?) I noticed a white patch on my upper hip bone (weird, right?). I mentioned it to my new primary care doctor during routine physical. She thought it was psoriasis. I've actually had psoriasis since I was little ( now 60yrs) so I said "no this is different". Long story, but I finally insisted on seeing a dermatologist who right away asked if I had any itching in the genital area. I actually did have for a few years since menopause, so my gyn always just blamed that and recommended estridiol creme. Fast forward, Dermot prescribed clobetasol.. that helped my itching. Things got better with Clob but Dermo sent me to gyno who did a biopsy (around 4 samples). That had caused a huge flare up so now I'm trying to get things to simmer back down now. The Epsom salt w/ borax bath had helped but I don't know how much to use. I'm experimenting. Any suggestions or specific recipe for the baths is appreciated. I'm also using a lubricant but everyone seems to like coconut oil. might give that a try. Thanks in advance. PJ

not sure I'm posting this in the right spot. new to this forum and recently diagnosed.

How long have you had a diagnosis of LS? since Nov 2020

Do you suspect that you have had this for much longer? probably two years

Is it currently under control? No

When did the irritation start? several years after menopause

Has the area always been irritable? Not really. Something changed about two years ago. terrible itching which was attributed to menopause. Also hair on my mons disappeared!

Are you suffering a flare at the moment? Yes

If so, can you attribute the cause to anything specific? Yes (esp bad after biopsy last week)

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? psoriasis since childhood. on elbows and knees only. recently bumps on hands diagnosed as atopic dermatitis. Sensitive to lotions, perfumes, tape, bands aide and latex adhesives.

Describe your skin type: olive complexion

Do you suffer from an autoimmune disorder : systemic lupus

Have you been tested for high cholesterol? yes

Do you suffer from high blood pressure? yes

Statins? yes

Diet and exercise? Healthy most of the time, walk daily, light stretching, core work/Pilates sometimes

Do you suffer from high blood pressure? yes

If so are you being treated for this? yes

Do you suffer from low blood pressure? No

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

Do you suffer from anxiety? Not generally, but more anxious since Covid lock down and political shenanigans from trumpf

Have you taken steps to reduce your stress? Yes

If so what have you done? crafts, music, reading for pleasure

Do you have a flare-up of LS if something is causing you stress? Not sure

Have you had surgery related to LS? No

Biopsy: yes

Have you experienced other surgery? Yes, rotator cuff repair 2016

Episiotomy: No

Please list any of the prescribed topical creams you use currently

Dermovate (Clobetasol)

Barrier creams: no

Alternative treatments: Epsom salt/borax baths

What sort of products do you avoid when cleaning the area? Soap, perfumes, fragrances, bubble baths

When do you wash? Morning

How do you dry yourself? Towel

Do you wash in hot or cold water? hot

Do you dread having a poo ? no

happens?

Does pee sting you? sometimes What do you do about it? use per bottle and spray water

What can you no longer wear? tight clothes,

What do you now wear? Loose cotton sweats jeans

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

Is this discomfort on already damaged skin? (?)

Hi Emis,

Thank you for posting all of this great information.

i just watched Dr Goldstein's video. I am a little confused as the only symptoms I have, could be best described as nappy rash around the anus, which is painful. Having seen many photos during Dr Goldstein's presentation I do not present with anything else.

Do you know if Lichen Sclerosus can start this way? I have not had a biopsy however think that is a good way to go. Also the cream, not ointment, the doctor put me onto is not Clob, and in fact does not seem to be making any difference.

Does this story sound familiar in any way to other people?

Many thanks.

hi all,

I'm a 29 year old female that was diagnosed with LS yesterday.

My gyn prescribed Triamcinolone because my lovely insurance doesn't cover the 1200$ tube of clob.

i guess I'm just wondering if anyone has success with this cream as its not as strong from what ive read? I was told to apply it twice a day for the next 3 months and then come back and if it hasn't gotten better he will do a biopsy. I'm scared.

I'm looking for some hope. I'm a highly sexual woman and I never want to give up that part of my life. I either have LS or LP and I'm scared on how it will affect my sex life. I've been using the clobestasol (just in the past 2 weeks) to some success. is there anything anyone like me has used that has been great for them? Anything at all that has helped so I can stay very sexually active.

Thanks in advance,

B.

hi all, firstly i just want to hug everyone, this condition is horrid and i wouldnt wish it on my worst enemy.

ok so ill try and make this as short as i can but id love for you to read my story and shed any light possible.

i am 38, diagnosed 2 years ago with lichen sclerosis. The irritation seemed to effect my clitoral area and anus but not my vaginal entrance. Earlier this year i had a huge flare up that was totally stress related, and i began to feel a different almost thrushy feeling around the entrance of my vagina. i was a little confused, i asked dr to test me for thrush however results were negative and all symptoms were put down to LS which confused me because the burning/discomfort around vaginal entrance just seemed different to the usual LS symptoms id experienced. Another few weeks of struggling and i approached the gyno begging for a swab to check for other things. The results came back and i had a huge inbalance and overgrowth of candida glabrata (this is a thrush that can be very hard to treat and the dr had not tested for it) i was relieved because it made sense that the burning around vagina entrance was caused by this. treatment was 2 weeks of boric acid pessaries, and i had 3 days of relief so i had sex with my partner and sure enough the burning came back. i went back for a second swab and the c.glabrata was still there so another 2 weeks of boric acid pessaries happened and the next swab showed that it was all gone. finally i felt comfortable. i had 4 weeks of no symptoms of ANYTHING.... it was amazing... until i got very stressed a few weeks ago and BOOM the LS flared up. It was around my clitoral area as i usual experience it so i began using my steroid cream which helped a little, as i began to manage the stress the LS seemed to calm but then the burning around my vagina entrance started. i went straight back to drs last week assuming the C. glabrata had returned, we did a swab and i was sure the results would prove it was back but i was shocked to find out it was negative and that all vaginal flora looked healthy and fine. so now i have this burning sensation still and no answer, which means this whole time ive thought the burning was from the thrush, it wasnt. but i dont understand, and i wanted to ask, does anyone else suffer from LS around clitoral area AND entrance but have a different feeling from it?

LS has always been itchy for me, i also had white patches that cleared up after first steroid cream, but this is burning and red and inflamed.

My LS is often burning and red. In areas where this happens, my doctor has recommended I use the clob until the flare up subsides. Other than that I use tacrolimus daily which has maintained vaginal skin stability for 2 years.