LICHEN SCLEROSIS - GOOD NEWS STORIES

Women's health
1

Hi, I have been suffering with LS for a couple of years but have only just been diagnosed. I am trying to keep positive about this condition and would really love to hear from fellow sufferers who are managing their condition well. I am particularly interested in hearing from women who have found that the appearance of their vulva has returned to normal to a certain extent, as I have read that this is possible.

There are lots of sad stories on this website, please can we have some happy ones? We need cheering up!!

:D

2

Hi Roo as I said in my first letter I was diag with LS a couple of months ago after nearly a year of backwards and forwrds to Dr.Then ref

to a gyn:who prescribed bentnovate for 2 wks then onto dermovate and

to use aqueos cream to wash down below with.At first i used the aqueos

every time I went to the loo.I used the old fashioned nappy lines to apply it and gently rinse it off with.I havent been itchy at all since starting this.but I still no its there!!!I have also found I can use infacare in by bath and to shower with now.I have it in my anus too so a put some aqueos cream there aswell and it really has helped.Iam 57 and am going through the menopuase snd my Dr said because my oestrogen is very low this sometime causes this problem.I can only I feel and know what all LS sufferers are going through,but you must remeber there MUST be a break through with this soon and above all stay POSITIVE GUYS.......

kind Regards to all

D

3

I've been really pleased with the effect that the dermovate has had on me. I had a lot of fusion but was told to use the dermovate twice a day for a month then once a day for a month. It's now 3 months since I started and I can see huge improvements. The labia are much better ( nearly back to normal) and the white patches have nearly all gone. However the thickening of the skin has spread to the top of my legs but that's not so bad as in the vulval area. I have to use the amount of dermovate that fits from the fingertip to the first fold in the finger each time. I think I've had excellent advice from my dermatologist so far.

4

After 1 year of symptons of itching, I had a biopsy done and LS was the diagnosis. Clobetasol (in canada) was prescribed and I used 2x per day for 3 months. The labia was still always inflame and if I tried to cut down to 1x a day, I would get lesions. So here is what I done. I use clob in the morning after my shower (no soap down there). After a couple of hours, I apply some vaseline or cold pressed extra virgin olive oil to keep the area moist. In the evening, I have a sitz bath just to refresh the area with warm water only. I then apply some Premarin cream (prescription estrogen cream) on the outer bits only NOT in the vagina. Apparently this rebuilds the tissue. In the morning things look really good. A pea size amount rubbed all over. I am on my second week of this system and things are looking up and I am feeling better with no more outbreaks. Outbreaks will occasionally happen but will deal with them as they come.

5

Hi, I was diagnosed with LS about 2 1/2 years ago aged 34 and it was a shock and I did feel a bit low about it and I have done on and off. Then I just stopped thinking about it. I would put on the dermovate when it was bad and that was as much as would think about it. Recently though the itch came back with a vengance!! and the good old dermovate didn't seem to be working (I also had felt a lump) so I went back to my GP who refered me back to gynae. Whilst waiting the age it takes to get an appointment I took matters into my own hands and saw a homeopath, I have seen homeopaths before for other things with good results. Since Jan I have been taking a remedy that suits me (everyone is different) I stopped using the dermovate so I would know if the remedy was making the difference. The itch has gradually gone, I still get a bit from time to time and I know that LS is remmisive but I really believe that my positive thought, the fact I don't dwell and the homeopathy are making a difference! When I got my appointment I actually saw the consultant this time !!!! He was really good I told him about my concerns over using a strong steroid long term and he agreed that it wasn't ideal, and has given me a much weaker one although he did think that that my case wasn't that bad and it seemed inactive. ( the lump turned out to be an unrelated harmless cyst that could go away on it's own). He agreed that it could go into permanent remission. And I am sticking with that ! I told my homeopath that I wanted it to go forever and I am determined it will. I also don't use any chemicals on my body. I try to use only natural cosmetics, soap, shampoo and I haven't touched deoderant for about 10 years (that is poison!!) I think it is important that you treat your skin well as it is a skin condition!

Just don't dwell and avoid chemicals thats my advice!!

6

Hi guys,

really pleased to hear some other positive stories! I was diagnosed about a year ago, just after i started university and was completely horrified and terrified. My mum came up to Leeds where i am at uni and came to the doctors with me. Doctor was really nice and calmed me down a lot. Gave me betnovate and aqueous and told me not to worry too much, betnovate started to work after about a month and now i only have to use it if it flares up. i live my life completely normally, (with the exception of having to be a bit more careful during sex) and sometimes having to give up on it if it hurts, but that doesn't bother me too much.

i hope all of you can be positive too and try to live your lives as normal!!

Natasha

7

Hello all I was just informed after 29 years (I am 29 and have had this since 6 months of age) that they now believe this is what I have. Sex does not hurt though one lip and vulva have been swollen and with great scar tissue for most of my life now (all that I can remember). Can anyone give me OTC ways to treat this, I am also in the USA.

8

I have recently been diagnosed with LS and have found neither GP I visit has anynunderstandingnof the condition I do visit a gynaecologist twice yearly as I also have a collapsed bladder and he diagnosed the LS but gave no info about it I had to look up online the info I found on the NHS site was quite helpfull I.e before urinating wipe vagina

with Vaseline and always use aqueous for washing and somewhere I read to use Sudocream very effective if not a bit messy and wear no knickers I do all these things and wash with a baby soft sponge three times daily and find this leaves me comfortable

I also have an under active thyroid and Vitiligo

I have used dermovate but appear to be allergic to it

I also get very sore inner tops of my legs and an uncomfortable anus

I use the Sudocream for this also

I also find Virgin olive oil is comforting as is Vaseline but the Vaseline tends to mark clothing

Lucklilynimdo,not suffer from itching

But I do suffer from disturb sleep. Does anyone else suffer from this problem?

I am 75 years of age but feel good generally

But I do suffer from disturbed sleep

9

Today my L S started to itch

Not a happy bunny about this

Where exactly do you apply the dermovate cream and how much do you apply

Janette

10

hi everyone . I am so sorry to hear about the misery of LS I was diagnosed by a gynae specialist a few weeks ago at the hospital in the uk , , I had been sore down below and had painful sex quite a bit , I assumed this was a thrush problem , or something worse ,

tbh I was quite relieved when the specialist had put a name to it and explained to me that they didn't know what caused it but they couldn't cure it just make it manageable with steroid cream and oestrogen cream , my gp had prescribed dermovate cream , I didn't feel a vast improvement after using it ,

the specialist said I had white and pink skin and the steroid cream wa good at thinning out the thicker parts but I needed oestrogen cream as well , , use them alternate days

watch the bio washing powders , cotton underwear etc ,

that must have been three weeks go , he said he would be writing to my g.p ,

I had only got a little bit of dermovate cream left from when saw gp ,I have waited for word from my g.p to say she has had letter and prescribe the medication I need but so far nothing , I don't know how long these referral letters take , but I rang my drs surgery twice this week and receptionist just said nothing has arrived yet and hey cant do anything until they get the letter , I was getting quite stressed as want to start treatment properly before things get any worse ,

I was told on fri that the receptionist was going to chase up my referral letter for me , I expected a call back about prescription , but nothing ! yet I told them I was almost out of cream to use ,

I really feel bad now that I have been sent to specialist diagnosed and now cant get the medication I need, now I have looked on the internet for info and feel very scared having seen the pictures and stories of what can happen if left unchecked ,

last night I thought I would check down there and can see my inner labia are now non existent , this is really scary everythings very red and inflamed tho not itchy and I am getting a really sore area at top of bottom crack , I presume this is the same thing,

my worst nightmare now would be being unable to have sex due to vaginal narrowing , I have heard so much about this happening , tho I feel better after reading on here about few that have improved since ,

really going to the specialist has just given me a name for it and no solution as I am not being prescribed what I need to relieve it , I now feel I have been left ,

I really feel very down about this at the moment , and I hope everyone else with this terrible condition gets better , I had been trying to stick to the candida diet before this happened as could see I had lot of conditions from eating certain foods , vinegar , bread mamite yeast , sugar , and from what others have said I think this is related to a fungal cause , something else they cant test for so they pretend it doesn't exist , and even harder to get treated for , more research into this is needed ,

11

Hello everyone,

I would like to share my story and the things I've done to help this condition get better. First and foremost I am 21 yrs old and I was just diagnosed with lichen sclerosis. My symptoms began 3 months ago... When I began to feel this burning and painful sensation right after having sexual intercourse with my boyfriend & was having vaginal discharge. So I decided to go to my doctor and get tested for STDs when I went everything came back positive therefore I thought it might of been a yeast infection. So that's wat I got treated for. But then every time before my period I would get this discomfort feeling no pain just a weird feeling anytime I would wipe my self after urinating n while in the shower. So I went back to my doctor at this point my doctor didn't know what it was so he sent me to a specialist. People PLENTY of doctors mistreat their patients not knowing about this condition!!! But while I waited for my appointment it was getting worst it started to feel dry n itchy around my vulva. Finally I went to my app n I was diagnosed with this disease. Of course I was scared worried hurt specially doing research n seeing that there is no cure. N e ways my doctor prescribed me clobetasol (temovate) n told me to apply once a day at bed time. For a whole 2 weeks I did as he said n I seen little signs of improvement so I did my research to help find something that would make me feel better during the day. I called my doctor n told him it wasn't getting better so he suggested I kept using it for a whole month. But I tried my own home remedies and I finally got to feel sooo much better no more itching and no more painful sex! I read that a lot of things affect thus disease n makes it appear since it is an autoimmune disease. So I stopped eating greasy foods no soda and I began to take vitamin d with antioxidants and vitamin b complex with vitamin c... And during the day I apply coconut oil on the outside of my vulva and inner lips n at night apply my steroid cream and I've been doing just fine. Hope this can help some of you ladies!!! Because I kno this can be a very stressful situation but don't give up there are by farthest worst diseases and things out there you just have to learn how to manage this and continue living ur lives! Oh and for those asking how much to apply of the cream only a thin layer so maybe a drop on ur finger and spread evenly until skin looks oily but that u can't see the actual cream. It is ok to apply on inner lips just not inside! Again hope this helps! Gudluck!

12

I know its been a year since you posted your story but I do hope that you are doing much better now.  I have some positive information about LS.  I offer you hope today because LS can be controlled to the point that you can and will live a happy and normal life again!  After being under the care of a great dermatologist that specialises in vuvlar diseases she has helped me to heal completely.  My last visit she stated that if she had not seen the LS on me a year ago she would now not be able to tell I ever had it.  Now it doesn't mean that I'm not responsible for keeping up the good work of following all her directions.  For the rest of my life I will continue to use only a very very tiny amount of the temovate ointment 3 times weekly in the places the LS was on my vuvlar to keep it from returning again.  I say tiny because it is very potent ointment so a lot of people mess up using way to much of it.  So I say to you, that things can get better with the help of a good doctor who knows how to treat LS.  Again things will get better and I hope that you are doing much better now.  I would love to hear back from you!  Have a great day!

13

Thanks, Rebecca, that sounds promising. Are you saying this happened in one year? I'm a lot better that I was a year ago when I was diagnosed, but not 100%. I've noticed a pattern, if you can call twice a pattern. Six months after diagnosis and prescription of Clobetasol (Temovate is a brand name for it) I felt like I was not only clear, but feeling kind of aroused. So we tried sex and I immediately got a bad yeast infection. Six months later (last week) I felt the same – no white patch, no tear, no itching and a real sense of well-being down there. So this time I played it smart and felt around with my fingers, no friction, just to see whether that little bit would have any repercussions. The next day the white patch was back. So now I think there's sort of a cycle, the peak of which feels lovely, but only for a day or so. If my gynae had happened to look on that day, she would have been congratulating herself.

Anyway, my good news is that I'm gradually cutting excess sugar out of my diet and finding that it helps as much as the meds. So, I'm optimistic that over time both will make a big difference. I know from a lifetime of psoriasis, it takes time for these miracle remissions to happen, but they do happen.

I've had undiagnosed LS my whole sixty-odd years. I do feel I'm in good hands and on top of the things I can do for myself.

Hope to hear more from you, Rebecca.

14

It's so nice to hear back from you and know that there has been some improvement.  Sorry you went that many years before they diagnosed you with LS.  So many doctors here in morganton nc are so uneducated about LS and don't even know what it is.  I was misdiagnosed with genital herpes by my doctor because he seen a torn place on my vuvlar.  The doctor put me on Valtrex 500mg for four years. Then he treated me for a yeast infection 4 months before he finally sent me to a doctor in Winston Salem NC.  The doctor there took one look at my vuvlar and said, "Looks like LS to me".  He completed two biopsies to confirm his

15

Sorry I didn't mean to hit the button too quickly before I was done.  After I was diagnosed I went to a dermatologist who helped me so much.  Yes it took about a year to get all the white shiny patches completely gone.  She taught me how to look at my vuvlar in a hand mirrow when I was putting the temovate on the shiny spots she told me to put it on.  She would show me everytime I went where I was not getting the ointment on and that's why it would not get better.  I use temovate ointment a small amount 3 times weekly always Monday, Wednesday and Friday night before bed.  This keeps the LS from returning.  I have never heard nor was I told by my dermatologist that sugar affects LS.  I am 1 in 30 women who also get LS on the upper body.  Not many symptoms with it though just use special soap to bathe in.  I want to tell you that having sex will get easier as you heal completely and have nothing left but scaring where the LS was.  My doctor told me to use vegetable oil to keep me from tearing.  It does help but there have been times when it would burn a little when I would go use bathroom after sex.  But now things are much better.  It does take time though and patience using the ointment in very small amounts.  The doctor had to leave me on the temovate instead of the generic because she told me the temovate is not as irriatating as the generic.  I am glad you are doing better just keep using your ointment on that one spot 3 times weekly small amount and it will eventually go away.  Hang in there and write me anytime.

16

I wonder if I should go back up to three times a week. I've been at everyn third day since the three-month startup. Fairly often I have to use it a second day in a row. I have my 6-month appointment with the gynae in a couple of weeks. Monday Wednesday Friday – that's easier than looking back to recall if I applied it the day before yesterday! M-W-F starting today.

How old are you? Did you get it post-menopause? I'm 62 and have had it since I had bad 'diaper rash' as a baby. Long wait for treatment! Looking back I did have multiple-years of remission a few times.

17

When I had a white patch or patches that appeared somewhere else on the vuvlar my doctor would have me to apply on very tiny amount of the ointment on the patches twice daily for 2 weeks until clear. Then once daily for 2 weeks.   It is when you have all the white shiny patches gone that you should start using the ointment 3 days a week to keep them from coming back.  My doctor would not release me for a year until she seen that all the shiny white patches where gone as well as my symptoms.  When all is clear then use the ointment 3 times weekly to keep shiny white patches from coming back with symptoms like sever itching.  I don't know where you live but it would be great if you could see doctor Libby Edwards in Charlotte NC because she is a excellent dermatiologist who studies vuvlar diseases.  She has helped me so much!  She even educates other doctors on Lichen Sclerosus.

I am 57 years old and I had a complete hysterectomy when I was 42 years old.  Yes I was post-menopause when I developed LS. Although my doctor believes that LS  happens when our immune system becomes overactive and start attacking the skin.  Bless your heart you have had LS a very long time.  Sometimes they say that when very young children and youth have LS that it can reverse itself sometimes.  Hope it goes well for you at the doctor appointment.

18

Hi, I have only just been diagnosed also so I too would like to hear some good news.

I scared myself to death looking the condition up on the internet.

19

Hi l have LS this is how l manage it l use 3 drops of tea tree oil pure in a small steam pudding pot with warm water and then apply Active Manuka Honey 10+ 2 0r 3 times a day l fine this amazing hope this might be something to try

20

Hi everyone. I wanted to post in here as I think it's a lovely idea to put positive stories up here too. 

My LS is by no means 'gone' (as much as this thing can 'go'wink but my recent flare up that had been driving me crazy for about two months has suddenly upped and gone so I am feeling really positive. 

I was diagnosed a few months ago , I'm in my early 20s and had had a year of being treated for thrush, BV, thrush, thrush and thrush again. Nothing helped. I moved adn was with a new GP who said maybe dermatitis. Then when that didn't get better she immediately got me a referall to a gyno and admitted that GPs are great at the 'basic' stuff (like thrush) but anything beyond that is much better suited to a consultant. I saw the consultant and she wasn't too sure about my diagnoses but when I told her of childhood asthma and ezcema with adult flare ups, she said things became much clearer. I think I am lucky in that mine is pretty mild - though it doesn't feel like that when you are thinking about your vagina nonstop because it is sore/painful/annoying you!!

I was given dermovate which I took when I had a flare up, Dermol to bathe in, and all was good. 

My recent flare up happened after prolonged periods in a swimming pool (amazing holiday, not so amazing reaction to chlorine) sudden stress in my personal and professional life and then getting a hideous cold. All of this impacted me and got me feeling down, which then fed the cycle, as I think we all know this is very connected to stress. Up until two weeks ago I was tempted to ring for an emergency appointment with the gyno.

Then...it changed. I had a relaxing holiday (no pools!) where I had time for an emollient bath every day. I chilled out. When I got back I got into habit of putting coconut oil on every night before sleep and dermol lotion on every morning whilst getting dressed. I also use vaseline before I have a shower as I find the water where I live affects me and also it protects from stray shampoo etc. And because of all this I haven't touched my steroid cream in 2 weeks and I can go a whole day without thinking about it! That is huge for me. And this sounds so silly but I looked down there today and it looked normal!! Not red and sore at all. It hasn't looked calm and not-angry in about a year! 

I am sure I will get flare ups in future but I feel like I've got it to a good place. So from now on it should hopefully be management and learning to minimise length of flare ups, and of course to avoid flare ups when possible. 

So that's my litle bit of positivity! Just keep asking for a doctor's help and trawl this site for tips and tricks (coconut oil, coconut oil, coconut oil) - all of the ones I mention above came from this site!