New to LS - start here

Hi there. I am 39 years old and was diagnosed as having LS and possibly LP as well although gynie not sure about the  Lp. My symptoms started out of no where about 9 months ago and it's been incredibly frustrating for me . Like many others I get the fissures down below and can get incredibly itchy too. My sex life is non existent as it is always sore. I really hope the steroid cream can help me. Not due back to gynie for 6 months tho. I feel this is a long time? Does this seem normal?? Have been freaking out a bit since diagnosed and feel like my womanhood has been stolen from me. 

Hello

i am new to this site.

i have been diagnosed for a year but I believe I had it for at least 10 years. The only symptom I had prior to a year ago was painful sex, so we stopped, sadly. Also quite a bit of thrush, which may not have, in retrospect been thrush only. A year ago I got very sore, burning and hurting urinating. Usual tests, swabs, urine test but nothing. Off to gynaecologist, saw a registrar who said it was atrophy due to age and to apply oestrogen cream daily for two weeks. After a week I had to stop it as so swollen and splitting and bleeding. Found a GP who specialised in women's health and she did a biopsy. That was the first time I have heard of Lichen Sclerosus, and I was a nurse for 35 years. She gave me Mometasone cream, a steroid.

My initial flare up went away and I forgot about it, then I got another four months ago and went to gynaecologist, a lady one this time and wouldn't be fobbed off by the registrar!  She said I must continue with the Mometasone and taper it off but no other advice or suggestions. Now I really am worried as I don't seem to be free of the constant burning and it's taken over my whole life and thinking. I am being treated for depression because of my worry over this and I realise it's a vicious cycle that I am stressed because of LS and LS seems to be exacerbated by stress!

I am 70 and should be glad I am not one of the young women I read about who have to cope with this and a job and family.

I am looking for suggestions to ease my symptoms and will read everything avidly. I am fortunate I have no itch as well, just the burning. 

I am from New Zealand  and many of the creams and medicines mentioned here I have never heard of. I have heard that emu oil in its purest form can be beneficial and I am hunting that up here.

thank you

Lynne B 

Hi there. I was diagnosed with severe LS aged 19. I had two and a half years of awful blistering, splitting, lesions that took weeks to heal but thankfully, it seems to have calmed down lately and I havent had a flare-up for a few months (although small tears still occur frequently). I am 22 now and unfortunately, the years of blistering have left me with virtually nothing 'down there' as most of the skin simply came away and now it is mostly hard scar tissue with the opening only maybe two centimetres wide. Obviously this makes any kind of intercourse impossible, not to mention exceedingly painful to even attempt. I have been with my partner for 4 years now, they have seen me through the worst of my condition but it has left us totally without a sex life, something we both miss and I feel incredibly guilty for. I would love to know if anyone in a similar position has had any surgery or other treatment relating to this and, if so, has it helped? I would be grateful for any advice as this is almost ruining my life!

How long have you had a diagnosis of LS? Age 56 . Diagnoses two years ago (brushed off as no big deal from a clueless primary care doc.  Asymtomatic, except some white line 'scarring'.  Recent 'outbreak' is the first lesion, itching, pain, etc.

Do you suspect that you have had this for much longer? Most definitely.  I had never heard of it, not had I had any gyns recommend regular self exams (with mirror) of my vagina.

Is it currently under control? NO!  Which is what brought me to this wonderful discussion group

When did the irritation start? Ten days ago

Has the area always been irritable? ocassional itchiness, short term, not concerning.

Are you suffering a flare at the moment? Yes (Oct 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? Wouldn't know, we don't discuss such private matters.

Do you have any other skin conditions along with the LS? No

Describe your skin type: Fair, sunburn easily

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

Have you been tested for high cholesterol? Yes ,cholesterl levels very slightly elevated

Do you suffer from high blood pressure? No, have very low blood pressure

Statins? No

Diet and exercise? Healthy diet, regular exercise.  Recently stopped drinking completely

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? I've had a lot of anxiety learning about LS!

Have you taken steps to reduce your stress? Not enough

If so what have you done?n/a

Do you have a flare-up of LS if something is causing you stress? Hopefully not

Have you had surgery related to LS? No

Biopsy: No (Scheduled for end of October -- to rule out vulvar cancer)

Have you experienced other surgery? No

Episiotomy: Yes

Please list any of the prescribed topical creams you use currently

Just starting treatment.

Emollients:

Barrier creams: no

Alternative treatments: Over the counter hydrocortisone,topical lidocaine

What sort of products do you avoid when cleaning the area? I've always used frangrance free products

When do you wash? Mornings

How do you dry yourself? Towel

Do you wash in hot or cold water? Warm

Do you dread having a poo? No What happens? Since flair up, bowel movements terribly painful.  Added fiber, hyudrating more.  May try stool softener.

Does pee sting you? No What do you do about it? No

What can you no longer wear? No restrictions so far

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

Do any foods seem to make the LS worse? Haven't determined yet

Is this discomfort on already damaged skin? It makes the area around the anus red and sore/itchy  No, this flair is the first

I'm retired US Military, and single (divorced).  I appreciate these threads, I'm learning traditional ob/gyns may not have the depth of information I will need to effectively manage my LS.  

Hello Everyone, I am 27 years old and just diagnosed with LS. My doctor said that on a scale of 1-10, I am 2-3. So I am happy to hear that. My gyn has been great at soothing my worries, but she hasn't really explained to me how my condition can progress. She kept saying that in some women the skin completely thins out, architectural loss, serious pain, etc happens, but lets start the treatment and see how this goes. I was hoping that someone here can explain. From what I read, prompt diagnosis greatly helps and I think that is my case, but I was wondering if anyone here was diagnosed early and the treatment stopped helping or maybe with menopause it got worse. I am a bit scared right now of where this LS will take me in the future. I am not looking for horror stories, but more realistic expectations. Yes early diagnosis is key, but even with that what can I expect?

I haven't been diagnosed yet but say maybe early onset. I don't know what to do anymore. No white patches or anything yet. Just burning and itching and soreness and an inflamed clitoris. And even my a is burns and hurts. Ugh!