New to LS - start here
Posted , 217 users are following.
Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.
There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.
https://patient.info/health/lichen-sclerosus-leaflet
Below are other useful websites:
http://www.lichensclerosus.net/ - Information to help manage LS
http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain
http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.
http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health
Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/
http://www.bssvd.org/ British Society for the Study of Vulval Disease
This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf
Discussion on users' thoughts on causes of LS
https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583
Other discussion groups that may have relevant discussions to LS:
https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763
https://patient.info/forums/discuss/browse/autoimmune-disorders-3827
39 likes, 367 replies
Morrell1951 Emis_Moderator
Edited
How long have you had a diagnosis of LS? Age 61
Do you suspect that you have had this for much longer? All adult life
Is it currently under control? Pretty much
When did the irritation start? Age 22
Has the area always been irritable? Some remissions for years at a time
Are you suffering a flare at the moment? Yes (Oct. 3 2014)
If so, can you attribute the cause to anything specific? Yes: stress
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? Yes: psoriasis
Describe your skin type: Olive, do not burn easily
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 diet, regular 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? No
Have you taken steps to reduce your stress? Yes, for fifteen years
If so what have you done? Meditation, tai chi, needlework, walking,
Do you have a flare-up of LS if something is causing you stress? Yes
Have you had surgery related to LS? No
Biopsy: No
Have you experienced other surgery? Tubal ligation
Episiotomy: Yes
Please list any of the prescribed topical creams you use currently
Dermovate (Clobetasol)
Emollients: Herbal olive oil - based ointment, herbal coconut oil/beeswax cream
Barrier creams: no
Alternative treatments: Shiatsu massage for stress, monthly
What sort of products do you avoid when cleaning the area? Soap, scents
When do you wash? Before bed
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? No What do you do about it? N/A
What can you no longer wear? Tight pants
What do you now wear? Loose cotton panties, loose trousers (looser at home)
Do any foods seem to make the LS worse? Sugar
Is this discomfort on already damaged skin? It makes the area around the anus red and sore/itchy
Guest Morrell1951
Posted
If anyone can empathise with this I would love to talk as this is so lonely to live with.
Morrell1951 Guest
Posted
Sorry I didn't see your post sooner.
Guest Morrell1951
Posted
I am hopefully at the end of whats been a very highly stressful period where in 2 weeks time we will have completed on the sale of my flat and go on holiday to destress with my whole family who are all aware and very supportive.
I have started eating more tomatoes, taking evening primrose oil, cut down on sugar intake, losing weight and no wine!!!! somethings are settling down but some are not, is there anything else i should be doing or thinking about.
Morrell1951 Guest
Posted
tuppermom2 Morrell1951
Posted
Do you suspect that you have had this for much longer? All adult life
Is it currently under control? somewhat
When did the irritation start? Age 20
Has the area always been irritable? Some remissions for a month or so at a time
Are you suffering a flare at the moment? Yes (since Feb 2015
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, just very sensitive skin
Describe your skin type: Med
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 diet
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? At times, esp when Pregnant
If so are you being treated for this? No
Do you suffer from anxiety? No
Have you taken steps to reduce your stress? Yes
If so what have you done? Meditation, therapy, medication, gardening
Do you have a flare-up of LS if something is causing you stress? Yes
Have you had surgery related to LS? Yes, vulval vastebulectomy
Biopsy: yes
Have you experienced other surgery? Yes, 2 c-sections
Episiotomy: No
Please list any of the prescribed topical creams you use currently
Dermovate ointment (Clobetasol), Estrogen cream (Premarin),
Emollients: Aquaphor, oil/beeswax cream
Barrier creams: no
Alternative treatments: No
What sort of products do you avoid when cleaning the area? Soap, scents
When do you wash? Before bed
How do you dry yourself? Towel, sometimes with hairdryer
Do you wash in hot or cold water? Hot
Do you dread having a poo? Yes What happens? The skin cracks, it hurts, and I bleed
Does pee sting you? Sometimes What do you do about it? Nothing
What can you no longer wear? Poly Panties, Hosery, tights, pants
What do you now wear? Loose cotton panties, skirtsooser
Do any foods seem to make the LS worse? Haven't decided
Is this discomfort on already damaged skin? Yes, my perinium is constantly red, sore. It makes the area around the anus red and sore/itchy
donna00089 Morrell1951
Posted
Morrell1951 donna00089
Posted
Good that you found us. Nobody would say a man with a raw penis who didn't want to have sex has a 'mental health problem'.
I put up with demanding spouses and had painful sex for many years. I'm 64 and quite content to have retired from sex. Maybe I always had a low drive, but Ive had LS since I first became sexually active.
wendy96673 Morrell1951
Posted
donna00089 Morrell1951
Posted
Morrell1951 donna00089
Posted
Morrell1951 wendy96673
Posted
carolbow Guest
Posted
I was spreading thick amounts of steroids for 6 weeks. Totally depressed as it seemed to be getting worse. I've taken 2 days off work. Step 1 I listened to the lecture. I had a warm bath for 20 mins the rubbed the steroid (pea size amount) in for 90 seconds. I got an app for relaxation and quitting sugar.
The improvement after just one nights sleep is staggering, yesterday am I was crying and depressed but now I feel I understand what I'm dealing with and how to cope. Debbie I send you support, xxx
Torispecs9999 Morrell1951
Posted
How long have you had a diagnosis of LS? Started at age 39
Do you suspect that you have had this for much longer? No, I think this may have started as a result of a miscarriage, following a DC.
Is it currently under control? No,
When did the irritation start? Age 38
Has the area always been irritable? Since diagnosis, but there was a misdiagnosis first, I was told I had Morphea. I had a second opinion about 6 months ago, and was told I did not have Morphea but LS. I did have feeling that this was the case. But was extremely upset, as the doc was so uncaring.
Are you suffering a flare at the moment? Yes (27 Dec 2016)
If so, can you attribute the cause to anything specific? On holiday, so difficult to say, but it does put pressure on also didn't bring steroid cream with me.
Do you suspect that other members of your family may have had/have LS? No, but my mother may have but did not discuss, and she as passed away.
Do you have any other skin conditions along with the LS? No
Describe your skin type: Olive, do not burn easily
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 diet, regular 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 on and off
Have you taken steps to reduce your stress? Yes, As best I can
If so what have you done? Meditation, yoga, diet
Do you have a flare-up of LS if something is causing you stress? Yes
Have you had surgery related to LS? No
Biopsy: Yes Morphea was diagnosed
Have you experienced other surgery? No
Episiotomy: no
Please list any of the prescribed topical creams you use currently
Dermovate (Clobetasol)
Emollients: Herbal olive oil - based ointment, herbal coconut oil/beeswax cream
Barrier creams: no
Alternative treatments: no
What sort of products do you avoid when cleaning the area? Soap, scents
When do you wash? Before bed
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? No What do you do about it? N/A
What can you no longer wear? Tight pants
What do you now wear? Loose cotton panties, loose trousers (looser at home) skirts
Do any foods seem to make the LS worse? Sugar
Is this discomfort on already damaged skin? Raw and itchy
jade17234 Morrell1951
Posted
How long have you had a diagnosis of LS? Age 5 (am currently 15)
Do you suspect that you have had this for much longer? I had it for about a year or so more just wasn't diagnosed till the decided to get a biopsy.
Is it currently under control? Somewhat
When did the irritation start? Around age 4
Has the area always been irritable? Somewhat
Are you suffering a flare at the moment? Yes (may, 2, 2017)
If so, can you attribute the cause to anything specific? I tend to scratch bc of it being irritated. I scratch unknowingly it's usually in my sleep.
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
Describe your skin type: Olive.
Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? No
Diet and exercise? Healthy diet, regular exercise
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 (age 5)
Have you experienced other surgery? No
Episiotomy: No
Please list any of the prescribed topical creams you use currently
Dermovate (Clobetasol)
Barrier creams: Yes
I have been subscribed many creams throughout the years some work some dont some only help for so long.
What sort of products do you avoid when cleaning the area? Soap & scents
When do you wash? Before bed
How do you dry yourself? Towel
Do you wash in hot or cold water? Warm
Does pee sting you? No What do you do about it? It burns, best thing i can tell you is to not wipe! I use a squirt bottle to rinse it off rather than wiping bc i find that painful.
What can you no longer wear? Any type of tight underwear or pants are also irritating. And tampons, i have experienced a lot of pain while having a flare up and being on my period. Tampons make it so much worse
What do you now wear? Loose cotton panties, loose trousers, sometimes when i have a cream on i will tend to skip underwear and wear really baggy shorts to let the area air out.
Is this discomfort on already damaged skin? It makes the everything really red, itchy, scratchy, and blisters form also the skin bleeds from these blisters.
Also, I am 15, and ever since I was 5 years old I was told that I may never be able to find sex pleasureable may not be able to tolerate it, and that i may not be able to conceive or give birth. I know i'm only 15 and I shouldn't even be worried about sexual activity but this scares me a lot... like I think about this and I cry at nights... LS is super stressful... and really scary. Ive had it for 10 years, they said it might go away for me after i hit puberty, and that gave me some hope, but it didn't stop and i still stuffer with it today. If anyone has had this as a child (i know it's super rare) can they please tell me there story. I haven't found anyone who has experienced this as a child and had it go through adulthood. Thanks.
mai22099 jade17234
Edited
Hi jade,
I am also 15 suffering from LS and as horrible as it is it's encouraging to know someone my age also has it too
denisep1956 donna00089
Posted
.
sandra01720 denisep1956
Posted
Also, a lady on here named Hanny, had a more severe case and she is very encouraging as she has found some answers. Hopefully she can give you some direction.
Nancy_K_B denisep1956
Posted
Dear Denise, I'm 72 and recently diagnosed. I was So so grateful last month to find kweega's comment of a couple years ago about discovering the need for Vitamin D3! oh my gosh! what a relief it has all been receding even before I was able to get a gynecology appt. I can't begin to imagine what you have been through... but I hope you check out vita min D and autoimmune and thyroid issues. Many blessings, Nancy in North Carolina
francesca80115 wendy96673
Posted
i find what really helps me is putting my microwavable teddy that heats up between my legs (poor teddy haha) i find the heat kinda confuses the itching sore feeling. i imagine you could use a hot water bottle, but the way i can kinda mold the teddy to my liking is a benefit.Hope it helps 😃
krystle05420 carolbow
Posted
can someone post the link for the video for me? i cant seem to find it. i am new on here.